Physical Therapy of Cerebral Palsy

92 Cerebral Palsy Management learn is to use a joystick to drive a wheelchair. Because the function of these children is often apparent by the time they are 4 to 5 years old and they are very intelligent, they are the only candidates with CP for whom an early power wheelchair fitting is a reasonable option. The power wheelchair does require the family to have transportation to carry it and an adapted home. Also, many children benefit from the use of weights on the wrists when they are trying to do specific tasks with the upper extremity, or the use of ankle weights when they are working on walking. Weighted vests can also help some children during seated activities. These weights may provide dampen- ing of the movement similar to the presence of spasticity, or there may be a more complicated control interaction. The weights do seem to move these children to a different and more stable chaotic attractor in the motor control abilities area. Each child is quite variable, requiring an experienced and pa- tient therapist to try many options and ascertain which combination is work- ing best for the individual child. Some parents become excellent at defining the specific circumstances in which their child can best function. In summary, the treatment of athetosis primarily revolves around experi- enced therapists who can help these children access the most useful functional motor abilities and to allow them to express their generally high cognitive function. These children often benefit greatly from the use of augmentative speech devices, and as such need to have access to excellent assistive com- munication services. Musculoskeletal procedures are useful only to stabilize joints, and in rare circumstances, to treat the underlying spasticity when it causes more functional problems than benefits. There is rarely any role for medication in the treatment of athetosis. Chorea and Ballismus Chorea is a movement disorder defined by jerky, rhythmic, small-range move- ments. These movements are more predominant distally in the limb; how- ever, they are present as proximal movements of the head and trunk as rhyth- mic, jerky motion as well. Ballismus is large movement based at the proximal joints, primarily the shoulder and elbow or hip and knee. These large move- ments are unpredictable, jerky, and often have a violent character to them. Some neurologists believe that chorea and ballismus are two ends of the same movement spectrum, and from the musculoskeletal treatment perspective, this concept works well. These movement patterns are the most rare of the movement disorders in children with CP. When these movement disorders are seen to be developing, especially if significant chorea develops, the diag- nosis of CP should be questioned. If significant chorea or ballismus move- ments start to develop in children with CP, additional workup frequently defines a more specific diagnosis, often one with a degenerative process. These movement disorders may get slowly worse if there are no mechanisms for controlling them. The primary pathology for chorea and ballismus occurs in the basal gan- glion; therefore, many drug options similar to the treatment of dystonia are considered as the first line of treatment. There have also been positive reports of ablative surgery on the internal capsule.107, 108 There are no specific treat- ments for the musculoskeletal affects of ballismus and chorea in children with CP. Summary of Motor Control Treatments It is often very difficult to separate out exact treatment recommendations be- tween the movement disorders, especially because there is not a clear patho-

3. Neurologic Control of the Musculoskeletal System 93 anatomic basis of one movement disorder compared with another. These dis- orders are somewhat overlapping in their presentation, and probably reflect movement patterns best understood as chaotic attractors in dynamic motor control without a clear anatomic separation. An analogy of these patterns might be the difference between a wind and rain storm compared with a thunderstorm or a tornado. Each of these storms is a definite recognized pat- tern, all occur in the same geographic region, and the cause of each is similar and not completely understood. This same analogy applies between the move- ment disorders of dystonia, athetosis, chorea, and ballismus. These movement patterns are fairly different and recognizable although a pathoanatomic understanding of the exact differences is not clear. However, because the patterns can be recognized, specific treatment algorithms for each can be defined. From the musculoskeletal perspective, dystonia is a nonvolitional movement pattern that is difficult to treat because of the persistent nature of the symptoms and the strength of the muscle forces. Athetosis is more predictable and is often under some volitional control that can be accessed through physical therapy intervention. There is very little musculoskeletal treatment that is beneficial for chorea and ballismus. Disorders of Balance Ataxia is a term used to describe poor balance in children with CP. Some children with CP seem to have an isolated ataxia, usually related to con- genital cerebellar malformations.110 Often, these are normally developing infants until 12 months of age, when it is noticed that they are not pro- gressing with their normal motor skills development. These children have delayed independent sitting and delayed walking, often not until 2 or 3 years of age. The problem with their balance is most clear in the development of independent walking, but as the children start doing fine motor skills, they demonstrate clumsiness in writing and other fine motor skills. Ataxia often affects speech as well. Typically, the normal development of balance reaches its maximum in middle childhood and remains stable during the adolescent growth spurt; however, these children appear to be losing balance ability. This apparent loss of balance ability is due to the rapid height gain that occurs during the adolescent growth spurt. The poor balance is a demonstration of the bal- ancing system having trouble controlling a taller structure that is mechani- cally harder to control than a shorter structure. This phenomenon is also seen in completely normal children and is usually called the adolescent clumsy stage of development. After a year at the end of maximum growth, the bal- ancing system will again gain control and these children will typically have the same function they had at 8 to 10 years of age before the adolescent growth spurt started. Although there are children with CP whose only problem is ataxia, it is much more common to have a mixed pattern of spasticity and ataxia, or hy- potonia and ataxia. Many children with athetosis probably also have ataxia, but it is very difficult to separate out ataxia in the presence of significant athetosis. Having good balance requires that the individual have a stable physical base of support and a good sensory feedback system that can inter- pret where the body is in space and how its position should be corrected. The lack of a stable base of support is demonstrated by an individual’s experi- ence of walking on slippery ice where the physical base of support is poor. An example of decreased balance occurs when an individual is under the in- fluence of alcohol, in which sensory feedback and interpretation are dulled.

94 Cerebral Palsy Management Case 3.8 Kerstin Kerstin, a girl who had a normal birth history and mild less variable. On physical examination she had normal re- mental retardation, started walking independently at 4 flexes, muscle strength, and motor control. This is the years of age. She had made very little progress in the typical pattern of primary ataxia. The main treatment is control of her gait, often having periods when she seemed to try to teach her to know her own limitations and to use to have more problems with her balance around periods assistive devices, such as crutches or canes, which she re- of rapid growth. However, by the time she reached full sists because she does not feel she needs them. maturity, her gait stabilized by being a little slower and In the musculoskeletal treatment plan of children with ataxia, it is important to evaluate the components of balance, such as their base of support or their sensory feedback, that are contributing to most of their functional problems (Case 3.8). Measurement of balance in children is difficult. Most of the balance studies in adults and children involve an assessment of postural stability by measuring the impact of different sensory systems, such as eyesight, the in- ner ear vestibular system, and joint sensory position feedback.120 These types of measurements have not become commonplace in clinical evaluations of children. The gross motor function measure (GMFM) has become a com- mon clinical evaluation tool for children with CP. Although this test does not specifically evaluate and measure ataxia, it has a significant component, es- pecially in domain 4, where tasks such as single-leg stands are evaluated. These tasks require separating out balance from motor control problems based on subjective evaluation of these children. Also, on gait analysis, tem- poral spatial characteristics such as step length and cadence tend to have high variability in children with significant ataxia. Children with only spasticity but good balance have less variability than normal children, and those with predominantly ataxia will have much higher variability. This variability is also true of trunk motion and the ability to walk in a straight line. Understanding balance deficits during walking is difficult be- cause momentum can make unstable children look much more stable than they really are. An example is a child who seems to walk very well while walking; however, every time she tries to stop, she has to grab the wall or fall to the floor. This is the analogy of riding a bicycle where the rider is very stable due to the momentum of motion. However, if the rider stops the motion and tries to sit on the bicycle, she becomes very unstable. A child who can walk well only at a certain speed may be an excellent walker; however, developing good functional walking skills requires that an individual be able to stop without falling over. Treatment of Ataxia Therapy to help children with ataxia improve their walking should focus on two areas. First, they must learn how to fall safely and develop protective responses when falling. They should be taught to recognize when they are falling, direct the fall away from hazards, and fall forward with their arms out in front to protect themselves. Until these children develop a good pro-

3. Neurologic Control of the Musculoskeletal System 95 tective response to falling, they should be wearing protective helmets and have supervision when walking. There are some children who cannot learn this protective response, and they will have a tendency to fall like a cut tree; this is especially dangerous if the individual has a tendency to fall backward, which places them at high risk of head injury. These children will have to be kept in wheelchairs except when they are under the direct supervision of an- other individual. The second area of treatment focus for children with ataxia should be directed at exercises that stimulate balancing. These exercises in- clude single-leg stance activities, walking a narrow board, roller skating, and other activities that stimulate the balancing system. These exercises have to be carefully structured to the individual child’s abilities, with the goal of maximizing each child’s ability safely and effectively. Walking effectively as an adult requires an individual to be able to alter gait, speed, and especially to slow down speed to reserve energy as she tires. This may mean using an assistive device, such as forearm crutches. For safety and social propriety, it is important that an individual can stop walking and stand in one place. Children who cannot learn to stop and stand in one place will have to switch to the use of an assistive device, usually forearm crutches, in middle childhood or adolescence. This step may seem like a regression to parents; however, it is moving the child forward to a more stable gait pat- tern that is socially acceptable and functional into adulthood. It is appro- priate for 3-year-old children to run and then fall when they get to where they are going and want to stop; however, this method in a 13-year-old would be both unsafe for the child and socially unacceptable. Finding the appropriate device requires some trial and error. There are rare children who can use single-point canes. Three- or four-point canes are a poor choice because they slow the child too much and are generally very inefficient. Either forearm crutches or a walker are typically the best assistive devices for an individual child. Some children’s ataxia is so severe that it requires the use of a wheel- chair for safe and functional mobility. Surgery for the Child with Ataxia The sensory perception and processing of balance cannot be altered in any predictable known way with surgery; however, the mechanical stability can be altered. Mechanical stability means that children have a stable base of support upon which to stand. Children with severe equinus at the ankle, such that they can only stand on their toes, will be unstable even if their balance is otherwise normal. Other examples of mechanical instability are severe planovalgus or equinovarus feet, severe fixed scoliosis, or severe contractures of the hip and knee. In general, the spine, hip, and knee contractures need to be very severe before they substantially affect balance. Fixed ankle equinus is the most common situation that is seen in early and middle childhood. Many of these children walk very well on their toes when they are moving with sufficient speed; however, they have no stable ability to stand in one place; this means that the children have to hold onto a wall, keep moving around in a circle, or fall to the floor when they want to stop. When these same children are made more stable by lengthening the gastrocnemius mus- cle to allow their feet to become plantigrade, their walking velocity slows, but they can now stop and stand in one place. This trade-off of stability and stance versus the speed of walking needs to be explained to parents to avoid their disappointment in the slower walking. This kind of fast toe walking is not a reasonable long-term option for older children for the safety reasons already explained. The safety and social inappropriateness of this gait pattern have to be carefully explained to parents for them to understand the trade- off in stability for speed provided by gastrocnemius lengthening.

96 Cerebral Palsy Management Orthotics For young children with dynamic plantar flexion causing them to toe walk, correcting the plantar flexion with the use of orthotics provides the same improvements in stability as was described for surgical lengthening of ten- dons. By removing flexibility of the ankle, and especially by decreasing plan- tar flexion and toe walking, these children will be in a more stable position to focus on controlling large joints, such as the hip, knee, and trunk. There- fore, these children will gain better experience in upright stance required for stable walking. The use of orthotics is the primary stabilizing structure that is provided to young children, usually beginning at approximately 18 to 24 months of age and then gradually decreasing instability as they get older. The orthotics also have the advantage that they can provide children a period of stability when standing with their feet flat, as well as allowing them to have time when they are walking up on their toes. This toe walking allows them to experience the stability of momentum, which stimulates the young developing nervous system. These orthotics work especially well until these children are 5 to 7 years of age. Summary of Treatment: Ataxia Children with ataxia need a planned approach of treatment combining a therapy environment in which the balance, sensory, and integration systems are stressed so they can learn to maximize balancing function. These chil- dren also need to have their mechanical base of support stabilized to provide a stable base upon which they can gain confidence and learn to use their mo- tor control skills. Mechanical stability is gained through the use of orthotics and assistive devices in young children, and as they get to middle childhood, selective muscle lengthenings can be utilized to improve their mechanical sta- bility and stance. The treatment plan should always consider how safe these children are to avoid falls, which might cause them significant injury. Chil- dren with significant ataxia are at significant risk for falls that may cause permanent additional head injuries, and because of this risk, some children with ataxia need to be kept in wheelchairs or use protective helmets based on their ability to learn protective maneuvers and the severity of their ataxia.

3. Neurologic Control of the Musculoskeletal System 97

98 Cerebral Palsy Management

3. Neurologic Control of the Musculoskeletal System 99

100 Cerebral Palsy Management References 1. Connolly KHF. Neurophysiology and Neuropsychology of Motor De- velopment. London: Mac Keith Press, 1997. 2. Gage J. Gait Analysis in Cerebral Palsy. London: Mac Keith Press, 1991. 3. Fahn S, Marsden CD, DeLong MR. Dystonia 3: Advances in Neurology. Philadelphia: Lippincott-Raven, 1998. 4. Nie J, DA Linkens. Fuzzy-Neural Control: Principles, Algorithms, and Applications. New York: Prentice Hall, 1995. 5. Gleick J. Chaos: Making a New Science. New York: Penguin Books, 1987. 6. Walsh G. Muscles, Masses, and Motion: The Physiology of Normality, Hypertonicity, Spasticity, and Rigidity. London: Mac Keith Press, 1992. 7. Sussman ME. The Diplegic Child: Evaluation and Management. Chicago: American Academy of Orthopaedic Surgeons, 1992. 8. Engsberg JR, Ross SA, Olree KS, Park TS. Ankle spasticity and strength in children with spastic diplegic cerebral palsy. Dev Med Child Neurol 2000;42:42–7. 9. Ashworth B. Preliminary trial of carisoprodol in multiple sclerosis. Prac- titioner 1964;192:540–2. 10. Sehgal N, McGuire JR. Beyond Ashworth. Electrophysiologic quantifi- cation of spasticity. Phys Med Rehabil Clin N Am 1998;9:949–79, ix. 11. Lin JP, Brown JK, Walsh EG. The maturation of motor dexterity: or why Johnny can’t go any faster. Dev Med Child Neurol 1996;38:244–54. 12. Dietz V, Berger W. Cerebral palsy and muscle transformation. Dev Med Child Neurol 1995;37:180–4. 13. Ziv I, Blackburn N, Rang M, Koreska J. Muscle growth in normal and spastic mice. Dev Med Child Neurol 1984;26:94–9. 14. Castle ME, Reyman TA, Schneider M. Pathology of spastic muscle in cerebral palsy. Clin Orthop 1979:223–32. 15. Engle AG, Franzini-Armstrong C. Myology. New York: McGraw-Hill, 1994:1936. 16. Miller F, Slomczykowski M, Cope R, Lipton GE. Computer modeling of the pathomechanics of spastic hip dislocation in children. J Pediatr Orthop 1999;19:486–92. 17. Nance PW, Bugaresti J, Shellenberger K, Sheremata W, Martinez- Arizala A. Efficacy and safety of tizanidine in the treatment of spastic- ity in patients with spinal cord injury. North American Tizanidine Study Group. Neurology 1994;44:S44–51; discussion S51–2. 18. Gracies J, Nance P, Elovic E, McGuire J, Simpson DM. Traditional pharmacological treatments for spasticity. Part II: General and regional treaments. Muscle Nerve 1997;Suppl 6:S92–S120. 19. Erickson DL, Blacklock JB, Michaelson M, Sperling KB, Lo JN. Con- trol of spasticity by implantable continuous flow morphine pump. Neuro- surgery 1985;16:215–7. 20. Zierski J, Muller H, Dralle D, Wurdinger T. Implanted pump systems for treatment of spasticity. Acta Neurochir Suppl 1988;43:94–9. 21. Albright AL, Cervi A, Singletary J. Intrathecal baclofen for spasticity in cerebral palsy [see comments]. JAMA 1991;265:1418–22. 22. Albright AL, Barry MJ, Fasick P, Barron W, Shultz B. Continuous in- trathecal baclofen infusion for symptomatic generalized dystonia. Neuro- surgery 1996;38:934–8; discussion 938–9. 23. Albright AL. Baclofen in the treatment of cerebral palsy. J Child Neurol 1996;11:77–83.

3. Neurologic Control of the Musculoskeletal System 101 24. Almeida GL, Campbell SK, Girolami GL, Penn RD, Corcos DM. Multidimensional assessment of motor function in a child with cerebral palsy following intrathecal administration of baclofen. Phys Ther 1997; 77:751–64. 25. Armstrong RW, Steinbok P, Cochrane DD, Kube SD, Fife SE, Farrell K. Intrathecally administered baclofen for treatment of children with spas- ticity of cerebral origin. J Neurosurg 1997;87:409–14. 26. Albright AL. Intrathecal baclofen in cerebral palsy movement disorders. J Child Neurol 1996;11(suppl 1):S29–35. 27. Gerszten PC, Albright AL, Barry MJ. Effect on ambulation of continu- ous intrathecal baclofen infusion. Pediatr Neurosurg 1997;27:40–4. 28. Wiens HD. Spasticity in children with cerebral palsy: a retrospective re- view of the effects of intrathecal baclofen. Issues Compr Pediatr Nurs 1998; 21:49–61. 29. Kita M, Goodkin DE. Drugs used to treat spasticity. Drugs 2000;59: 487–95. 30. Bennett MI, Tai YM, Symonds JM. Staphylococcal meningitis follow- ing Synchromed intrathecal pump implant: a case report. Pain 1994;56: 243–4. 31. Sweet CS, Wenger HC, Gross DM. Central antihypertensive properties of muscimol and related gamma-aminobutyric acid agonists and the interaction of muscimol with baroreceptor reflexes. Can J Physiol Phar- macol 1979;57:600–5. 32. Rode G, Mertens P, Beneton C, Schmitt M, Boisson D. Regression of vasomotor disorders under intrathecal baclofen in a case of spastic para- plegia. Spinal Cord 1999;37:370–2. 33. Agmo A, Paredes R. GABAergic drugs and sexual behaviour in the male rat. Eur J Pharmacol 1985;112:371–8. 34. Leipheimer RE, Sachs BD. GABAergic regulation of penile reflexes and copulation in rats. Physiol Behav 1988;42:351–7. 35. Denys P, Mane M, Azouvi P, Chartier-Kastler E, Thiebaut JB, Bussel B. Side effects of chronic intrathecal baclofen on erection and ejaculation in patients with spinal cord lesions. Arch Phys Med Rehabil 1998;79:494–6. 36. Steinbok P, Reiner AM, Beauchamp R, Armstrong RW, Cochrane DD, Kestle J. A randomized clinical trial to compare selective posterior rhi- zotomy plus physiotherapy with physiotherapy alone in children with spastic diplegic cerebral palsy [published erratum appears in Dev Med Child Neurol 1997;39(11): inside back cover] [see comments]. Dev Med Child Neurol 1997;39:178–84. 37. McLaughlin JF, Bjornson KF, Astley SJ, et al. Selective dorsal rhizotomy: efficacy and safety in an investigator-masked randomized clinical trial [see comments]. Dev Med Child Neurol 1998;40:220–32. 38. Cohen AR, Webster HC. How selective is selective posterior rhizotomy? Surg Neurol 1991;35:267–72. 39. Logigian EL, Wolinsky JS, Soriano SG, Madsen JR, Scott RM. H reflex studies in cerebral palsy patients undergoing partial dorsal rhizotomy [see comments]. Muscle Nerve 1994;17:539–49. 40. Sacco DJ, Tylkowski CM, Warf BC. Nonselective partial dorsal rhizo- tomy: a clinical experience with 1-year follow-up. Pediatr Neurosurg 2000;32:114–8. 41. Peacock WJ, Arens LJ, Berman B. Cerebral palsy spasticity. Selective posterior rhizotomy. Pediatr Neurosci 1987;13:61–6. 42. Fasano VA, Broggi G, Barolat-Romana G, Sguazzi A. Surgical treatment of spasticity in cerebral palsy. Childs Brain 1978;4:289–305.

102 Cerebral Palsy Management 43. Heimburger RF, Slominski A, Griswold P. Cervical posterior rhizotomy for reducing spasticity in cerebral palsy. J Neurosurg 1973;39:30–4. 44. Benedetti A, Colombo F. Spinal surgery for spasticity (46 cases). Neuro- chirurgia (Stuttg) 1981;24:195–8. 45. Benedetti A, Colombo F, Alexandre A, Pellegri A. Posterior rhizotomies for spasticity in children affected by cerebral palsy. J Neurosurg Sci 1982;26:179–84. 46. Gul SM, Steinbok P, McLeod K. Long-term outcome after selective pos- terior rhizotomy in children with spastic cerebral palsy. Pediatr Neuro- surg 1999;31:84–95. 47. Subramanian N, Vaughan CL, Peter JC, Arens LJ. Gait before and 10 years after rhizotomy in children with cerebral palsy spasticity. J Neurosurg 1998;88:1014–9. 48. Giuliani CA. Dorsal rhizotomy for children with cerebral palsy: support for concepts of motor control. Phys Ther 1991;71:248–59. 49. Steinbok P, Daneshvar H, Evans D, Kestle JR. Cost analysis of continu- ous intrathecal baclofen versus selective functional posterior rhizotomy in the treatment of spastic quadriplegia associated with cerebral palsy. Pediatr Neurosurg 1995;22:255–64. 50. Marty GR, Dias LS, Gaebler-Spira D. Selective posterior rhizotomy and soft-tissue procedures for the treatment of cerebral diplegia. J Bone Joint Surg [Am] 1995;77:713–8. 51. Carroll KL, Moore KR, Stevens PM. Orthopedic procedures after rhi- zotomy. J Pediatr Orthop 1998;18:69–74. 52. Crawford K, Karol LA, Herring JA. Severe lumbar lordosis after dorsal rhizotomy. J Pediatr Orthop 1996;16:336–9. 53. Mooney JF III, Millis MB. Spinal deformity after selective dorsal rhizo- tomy in patients with cerebral palsy. Clin Orthop 1999:48–52. 54. Peter JC, Hoffman EB, Arens LJ, Peacock WJ. Incidence of spinal defor- mity in children after multiple level laminectomy for selective posterior rhizotomy. Childs Nerv Syst 1990;6:30–2. 55. Peter JC, Hoffman EB, Arens LJ. Spondylolysis and spondylolisthesis after five-level lumbosacral laminectomy for selective posterior rhizotomy in cerebral palsy. Childs Nerv Syst 1993;9:285–7; discussion 287–8. 56. Greene WB, Dietz FR, Goldberg MJ, Gross RH, Miller F, Sussman MD. Rapid progression of hip subluxation in cerebral palsy after selective posterior rhizotomy. J Pediatr Orthop 1991;11:494–7. 57. Heim RC, Park TS, Vogler GP, Kaufman BA, Noetzel MJ, Ortman MR. Changes in hip migration after selective dorsal rhizotomy for spastic quadriplegia in cerebral palsy. J Neurosurg 1995;82:567–71. 58. Steinbok P, Schrag C. Complications after selective posterior rhizotomy for spasticity in children with cerebral palsy. Pediatr Neurosurg 1998; 28:300–13. 59. Cobb MA, Boop FA. Replacement laminoplasty in selective dorsal rhi- zotomy: possible protection against the development of musculoskeletal pain. Pediatr Neurosurg 1994;21:237–42. 60. Payne LZ, DeLuca PA. Heterotopic ossification after rhizotomy and femoral osteotomy. J Pediatr Orthop 1993;13:733–8. 61. Abbott R. Complications with selective posterior rhizotomy. Pediatr Neurosurg 1992;18:43–7. 62. Cooper IS, Upton AR, Rappaport ZH, Amin I. Correlation of clinical and physiological effects of cerebellar stimulation. Acta Neurochir Suppl 1980;30:339–44. 63. Davis R, Schulman J, Delehanty A. Cerebellar stimulation for cerebral palsy—double blind study. Acta Neurochir Suppl 1987;39:126–8.

3. Neurologic Control of the Musculoskeletal System 103 64. Schulman JH, Davis R, Nanes M. Cerebellar stimulation for spastic cerebral palsy: preliminary report; on-going double blind study. Pacing Clin Electrophysiol 1987;10:226–31. 65. Barolat G. Experience with 509 plate electrodes implanted epidurally from C1 to L1. Stereotact Funct Neurosurg 1993;61:60–79. 66. Hugenholtz H, Humphreys P, McIntyre WM, Spasoff RA, Steel K. Cer- vical spinal cord stimulation for spasticity in cerebral palsy. Neuro- surgery 1988;22:707–14. 67. Cusick JF, Larson SJ, Sances A. The effect of T-myelotomy on spasticity. Surg Neurol 1976;6:289c92. 68. Ivan LP, Wiley JJ. Myelotomy in the management of spasticity. Clin Orthop 1975:52–6. 69. Padovani R, Tognetti F, Pozzati E, Servadei F, Laghi D, Gaist G. The treatment of spasticity by means of dorsal longitudinal myelotomy and lozenge-shaped griseotomy. Spine 1982;7:103–9. 70. Carpenter EB. Role of nerve blocks in the foot and ankle in cerebral palsy: therapeutic and diagnostic. Foot Ankle 1983;4:164–6. 71. Gracies JM, Elovic E, McGuire J, Simpson DM. Traditional pharmaco- logical treatments for spasticity. Part I: Local treatments. Muscle Nerve Suppl 1997;6:S61–91. 72. Carpenter EB, Seitz DG. Intramuscular alcohol as an aid in management of spastic cerebral palsy. Dev Med Child Neurol 1980;22:497–501. 73. Hariga J. Treatment of spasticity by alcohol injection. Dev Med Child Neurol 1970;12:825. 74. Tardieu G, Tardieu C, Hariga J, Gagnard L. Treatment of spasticity in injection of dilute alcohol at the motor point or by epidural route. Clin- ical extension of an experiment on the decerebrate cat. Dev Med Child Neurol 1968;10:555–68. 75. Easton JK, Ozel T, Halpern D. Intramuscular neurolysis for spasticity in children. Arch Phys Med Rehabil 1979;60:155–8. 76. Griffith ER, Melampy CN. General anesthesia use in phenol intramuscu- lar neurolysis in young children with spasticity. Arch Phys Med Rehabil 1977;58:154–7. 77. Matsuo T, Tada S, Hajime T. Insufficiency of the hip adductor after an- terior obturator neurectomy in 42 children with cerebral palsy. J Pediatr Orthop 1986;6:686–92. 78. Root L, Spero CR. Hip adductor transfer compared with adductor teno- tomy in cerebral palsy. J Bone Joint Surg [Am] 1981;63:767–72. 79. Sharma S, Mishra KS, Dutta A, Kulkarni SK, Nair MN. Intrapelvic ob- turator neurectomy in cerebral palsy. Indian J Pediatr 1989;56:259–65. 80. Keenan MA, Todderud EP, Henderson R, Botte M. Management of in- trinsic spasticity in the hand with phenol injection or neurectomy of the motor branch of the ulnar nerve. J Hand Surg [Am] 1987;12:734–9. 81. Doute DA, Sponseller PD, Tolo VT, Atkins E, Silberstein CE. Soleus neurectomy for dynamic ankle equinus in children with cerebral palsy. Am J Orthop 1997;26:613–6. 82. Nogen AG. Medical treatment for spasticity in children with cerebral palsy. Childs Brain 1976;2:304–8. 83. Pinder RM, Brogden RN, Speight TM, Avery GS. Dantrolene sodium: a review of its pharmacological properties and therapeutic efficacy in spasticity. Drugs 1977;13:3–23. 84. Joynt RL, Leonard JA Jr. Dantrolene sodium suspension in treatment of spastic cerebral palsy. Dev Med Child Neurol 1980;22:755–67. 85. Jankovic J, Brin MF. Botulinum toxin: historical perspective and poten- tial new indications. Muscle Nerve Suppl 1997;6:S129–45.

104 Cerebral Palsy Management 86. Brin MF. Botulinum toxin: chemistry, pharmacology, toxicity, and im- munology. Muscle Nerve Suppl 1997;6:S146–68. 87. Brin MF. Dosing, administration, and a treatment algorithm for use of botulinum toxin A for adult-onset spasticity. Spasticity Study Group. Muscle Nerve Suppl 1997;6:S208–20. 88. Borodic GE, Ferrante R, Pearce LB, Smith K. Histologic assessment of dose-related diffusion and muscle fiber response after therapeutic bot- ulinum A toxin injections. Mov Disord 1994;9:31–9. 89. Barwood S, Baillieu C, Boyd R, et al. Analgesic effects of botulinum toxin A: a randomized, placebo-controlled clinical trial. Dev Med Child Neurol 2000;42:116–21. 90. Greene PE, Fahn S. Use of botulinum toxin type F injections to treat torticollis in patients with immunity to botulinum toxin type A. Mov Disord 1993;8:479–83. 91. Koman LA, Mooney JF III, Smith B, Goodman A, Mulvaney T. Man- agement of cerebral palsy with botulinum-A toxin: preliminary inves- tigation. J Pediatr Orthop 1993;13:489–95. 92. Fehlings D, Rang M, Glazier J, Steele C. An evaluation of botulinum- A toxin injections to improve upper extremity function in children with hemiplegic cerebral palsy [see comments]. J Pediatr 2000;137:331–7. 93. Graham HK, Aoki KR, Autti-Ramo I, et al. Recommendations for the use of botulinum toxin type A in the management of cerebral palsy. Gait Posture 2000;11:67–79. 94. Tarczynska M, Karski T, Abobaker S. [Hip dislocation in children with cerebral palsy—the result of illness or treatment error]. Ann Univ Mariae Curie Sklodowska [Med] 1997;52:95–102. 95. Crenshaw S, Herzog R, Castagno P, et al. The efficacy of tone-reducing features in orthotics on the gait of children with spastic diplegic cere- bral palsy. J Pediatr Orthop 2000;20:210–6. 96. Radtka SA, Skinner SR, Dixon DM, Johanson ME. A comparison of gait with solid, dynamic, and no ankle-foot orthoses in children with spastic cerebral palsy [see comments] [published erratum appears in Phys Ther 1998;78(2):222–4]. Phys Ther 1997;77:395–409. 97. Ricks NR, Eilert RE. Effects of inhibitory casts and orthoses on bony alignment of foot and ankle during weight-bearing in children with spasticity. Dev Med Child Neurol 1993;35:11–6. 98. Bertoti DB. Effect of short leg casting on ambulation in children with cerebral palsy. Phys Ther 1986;66:1522–9. 99. Cruickshank DA, O’Neill DL. Upper extremity inhibitive casting in a boy with spastic quadriplegia. Am J Occup Ther 1990;44:552–5. 100. Otis JC, Root L, Kroll MA. Measurement of plantar flexor spasticity during treatment with tone-reducing casts. J Pediatr Orthop 1985;5: 682–6. 101. Lesny IA. Follow-up study of hypotonic forms of cerebral palsy. Brain Dev 1979;1:87–90. 102. Nelson KB, Ellenberg JH. Neonatal signs as predictors of cerebral palsy. Pediatrics 1979;64:225–32. 103. Thajeb P. The syndrome of delayed posthemiplegic hemidystonia, hemi- atrophy, and partial seizure: clinical, neuroimaging, and motor-evoked potential studies. Clin Neurol Neurosurg 1996;98:207–12. 104. Barry MJ, VanSwearingen JM, Albright AL. Reliability and respon- siveness of the Barry-Albright Dystonia Scale. Dev Med Child Neurol 1999;41:404–11. 105. Ford B, Greene P, Louis ED, et al. Use of intrathecal baclofen in the treatment of patients with dystonia. Arch Neurol 1996;53:1241–6.

3. Neurologic Control of the Musculoskeletal System 105 106. Gros C, Frerebeau P, Perez-Dominguez E, Bazin M, Privat JM. Long term results of stereotaxic surgery for infantile dystonia and dyskine- sia. Neurochirurgia (Stuttg) 1976;19:171–8. 107. Lin JJ, Lin GY, Shih C, Lin SZ, Chang DC, Lee CC. Benefit of bilateral pallidotomy in the treatment of generalized dystonia. Case report. J Neurosurg 1999;90:974–6. 108. Vitek JL, Chockkan V, Zhang JY, et al. Neuronal activity in the basal ganglia in patients with generalized dystonia and hemiballismus. Ann Neurol 1999;46:22–35. 109. Kyllerman M. Reduced optimality in pre- and perinatal conditions in dyskinetic cerebral palsy—distribution and comparison to controls. Neuropediatrics 1983;14:29–36. 110. Acardi J. Diseases of the Nervous System in Childhood. Oxford, England: Mac Keith Press, 1992:1408. 111. O’Reilly DE, Walentynowicz JE. Etiological factors in cerebral palsy: an historical review. Dev Med Child Neurol 1981;23:633–42. 112. Johnson RK, Goran MI, Ferrara MS, Poehlman ET. Athetosis increases resting metabolic rate in adults with cerebral palsy. J Am Diet Assoc 1996;96:145–8. 113. Fraioli B, Nucci F, Baldassarre L. Bilateral cervical posterior rhizotomy: effects on dystonia and athetosis, on respiration and other autonomic functions. Appl Neurophysiol 1977;40:26–40. 114. Davis R, Barolat-Romana G, Engle H. Chronic cerebellar stimulation for cerebral palsy—five-year study. Acta Neurochir Suppl 1980;30: 317–32. 115. Ebara S, Harada T, Yamazaki Y, et al. Unstable cervical spine in athetoid cerebral palsy [published erratum appears in Spine 1990; 15(1):59]. Spine 1989;14:1154–9. 116. Fuji T, Yonenobu K, Fujiwara K, et al. Cervical radiculopathy or myelopathy secondary to athetoid cerebral palsy. J Bone Joint Surg [Am] 1987;69:815–21. 117. Kidron D, Steiner I, Melamed E. Late-onset progressive radiculo- myelopathy in patients with cervical athetoid-dystonic cerebral palsy. Eur Neurol 1987;27:164–6. 118. Nishihara N, Tanabe G, Nakahara S, Imai T, Murakawa H. Surgical treatment of cervical spondylotic myelopathy complicating athetoid cerebral palsy. J Bone Joint Surg [Br] 1984;66:504–8. 119. Wang PY, Chen RC. Cervical spondylotic radiculomyelopathy caused by athetoid-dystonic cerebral palsy—clinical evaluation of 2 cases. Taiwan I Hsueh Hui Tsa Chih 1985;84:986–94. 120. Watanuki K, Takahashi M, Ikeda T. Perception of surrounding space controls posture, gaze, and sensation during Coriolis stimulation. Aviat Space Environ Med 2000;71:381–7.

4 Therapy, Education, and Other Treatment Modalities Almost all children with cerebral palsy (CP) will receive therapy and go to school. Most of the therapy has to be ordered by physicians as part of the medical treatment of the CP. Because education is a universal experience in the lives of these children, it behooves the physicians treating the motor im- pairments to have some understanding of the educational system. These chil- dren often receive therapy as early as in the neonatal intensive care nursery. This early therapy is provided in a medically-based construct. As the chil- dren get older, especially over age 3 years, the main intervention shifts to the educational system, and much of this therapy also shifts into the education milieu. As these children enter grade school, except for periods of acute med- ical treatment, education is predominant with therapy occurring within this context. During the children’s growth and development, the therapists pro- vide the best bridge between the education and medical systems. The final physical and emotional function and independence of these children depends on intervention by both the medical and educational systems; therefore, the bridging effect provided by the therapists is an important aspect. In addition to the standard therapy treatment in education, there are many treatment modalities that are promoted as beneficial for CP treatment. Some of these modalities may start as an alternative medicine approach, such as hippo- therapy, but then develop acceptance within traditional medicine. Others, such as hyperbaric oxygen therapy, develop a reputation of possible benefit but, upon careful investigation, their validity is discredited. The physician who treats the motor impairments of children with CP should understand the techniques, goals, and expected outcomes of therapies they order while also understanding the educational context in which these children function. Therapy In this discussion, the term therapy applies to physical, occupational, or speech therapy, all disciplines trained in the milieu of the medical system, although these individuals often work in the educational system. These dis- ciplines overlap significantly; however, each has a very defined area of ex- pertise. Physical therapy focuses on gross motor function, such as walking, running, jumping, and joint range of motion. There is some overlap with oc- cupational therapy, where the main focus is on fine motor skills, specifically upper extremity function and activities of daily living such as dressing, toi- leting, and bathing. This overlap between physical and occupational therapy occurs in the areas of seating and infant stimulation programs where both therapists perform the same function. Speech therapists focus on oral motor

108 Cerebral Palsy Management activities such as speech, chewing, and swallowing. A subspecialist speech therapist will do augmentative communication evaluations. Speech and oc- cupational therapy overlap in the area of teaching feeding skills to care- takers and self-feeding therapy for patients. The specific areas of practice of each of the therapy disciplines vary slightly among geographic regions and facilities. A major focus of all therapy is to maximize the individual’s in- dependence. The goal of this discussion on the therapy disciplines is not to promote a full review of each discipline, but to provide only the information that a physician who treats children concurrently with the therapist should possess. Also, most of this discussion is directed at the musculoskeletal mo- tor impairments because that is the focus of this text; however, it must be remembered that speech and communication are usually rated as more im- portant by individuals with disabilities. Physical Therapy Applying physical therapy to children with CP is common and has a large body of published data. Since 1990, there have been approximately 300 ci- tations in the National Library of Medicine reporting the use of physical therapy in children with CP. Most of these papers report physical therapy being used in conjunction with other treatments, such as surgical hip recon- structions or lower extremity reconstructions for gait improvement, or fol- lowing dorsal rhizotomy and Botox injections. Many of these reports are case series without controls to evaluate the index procedure, and most make no objective attempt to evaluate the impact of the therapy program sepa- rately from other modalities. The number of reports attempting to evaluate the impact of specific therapy programs is increasing; however, many con- tain few patients and no control groups.1 The role of physical therapists, and the therapy they provide to these children, is very complex. Many reports presume that physical therapy is like medication in that it can be evaluated by having a control group with no treatment. This research approach has some merit if no effect is found, such as the evaluation of therapy in infant stimulation programs.2 However, when a positive effect is found, the inti- mate, personal interaction that physical therapy requires with the children and parents makes it very difficult to sort out what effect the specific thera- peutic regimen or a specific treatment had on the outcome. Recognizing these complex interactions has led to recommending more complex and global evaluations using multivariate analysis in research protocols.3 This trend in therapy research should be incorporated into the evaluation of all CP im- pairments because it has the potential to impart a better understanding of the effect of each modality in the treatment routine. For example, a treat- ment protocol where physical therapy modalities along with casting and Botox are used to treat gait abnormality in young children cannot be rea- sonably evaluated by any other means. Recognizing the complex interaction of physical therapy in its own right will lead to improved research techniques for other treatments as well. The long history of physical therapy has been predominated by different theories of development and specific protocols to impact childhood devel- opment.4 Most of these therapy protocols were designed with a theoretical understanding that distal lower-level functions will influence higher-level cor- tical functions to develop. In this theory the spinal cord-mediated activities, such as single synapse reflexes and spasticity, have to be corrected first be- fore the more primitive higher reflexes can be addressed. These primitive reflexes then have to be corrected before high-functioning cortical motor

4. Therapy, Education, and Other Treatment Modalities 109 activities, such as walking, can develop properly. This hierarchical theory of neurologic development has some base in animal studies. For example, the need for the eye to function properly before the optical cortex will organize and function appropriately is well documented.5 All the major therapy pro- tocols developed and used in modern medicine before the 1990s were based on this hierarchical theory of development.4 These protocols are still widely used in pediatric physical therapy today, and are described briefly here be- cause parents often ask for explanations of the relative importance of one therapy technique over another. The scope of this text, however, makes it impossible to give a full discription of these techniques. In the 1990s, the theory of neurologic development was slowly changing to a more complex, circular theory in which subsystems are recognized to interact. In this the- ory, the psychologic state and behavior of children are also recognized as be- ing important in their motor function. Complex interactions exist between lower reflexes and cortical motor movement patterns, in which the inter- actions and impacts are both from the higher function to the lower function and vice versa.6 This change in motor development theory has required phys- ical therapists to incorporate multiple facets of the therapy experience and has led to the therapist becoming more a teacher or coach and less a techni- cian who applies a treatment to a child. However, this change in approach is not universally adapted, because neurologic pediatric physical therapy is a small subspecialty of the much larger physical therapy discipline. In gen- eral, physical therapists tend to have clinical aptitudes that are similar to those of orthopaedic surgeons. Clinicians with a treatment approach like to identify a specific problem, then apply a cure to make the problem go away. This approach was feasible in the early therapy protocols based on the hier- archical development theory; however, it often frustrated the child, the family, and the therapist. Developing a concept where the child, family, physician, and therapist are one team whose goal is to make the child as in- dependent as he or she can be when growing up is a much more functional approach. With this approach, an experienced therapist is the ideal head coach of the team, because this is the individual who knows the child best from a medical perspective and has the best relationship with the child, family, educators, and physicians. Unfortunately, because of frequent changes in therapists, this role of head coach often falls to the family. For some fam- ilies, this works well, but for others, it does not. The therapist who takes on the role of coach of a child’s motor impair- ment management team has to develop a good relationship with the family and child. In general, this relationship does not work well if the parent or child does not like the therapist. Also, the therapist has to have some under- standing of behavior management techniques to get the most cooperation from a child. Being aware of medical and other family issues is also important. The physical therapist should understand how to access social services and medical help in the community that may be needed by the family. One of the problems of this expanded role of pediatric therapists is that many therapists do not believe they have the training needed to take on this role. Most phys- ical therapy training programs are at the master’s degree level; however, the amount of training in pediatrics is minimal in many programs where there is a much greater allure to sports medicine and other adult rehabilitation di- rections. This experience mirrors what happens in orthopaedic training. Currently, there are a few well-developed specialty training programs for pe- diatric therapists, and none as well organized as the fellowship programs in pediatric orthopaedics. The trend to standardize this pediatric training is moving ahead and should train therapists who are much better equipped to take on the role in which they are currently expected to function.

110 Cerebral Palsy Management Major Therapy Protocols All modern major therapy protocols were developed from a hierarchical understanding of neurologic motor development. Many of these protocols have high regional concentrations of use, often in the area in which the sys- tem was initially developed and popularized. The same theories of therapy are widely used among both occupational and physical therapy. Neurodevelopmental Treatment Approach (NDT): Bobath Technique The NDT treatment approach was developed in England in the 1940s and 1950s by Dr. and Mrs. Bobath based on their understanding of neurologic development and experience gained in treating children.7 Because of the well-developed concepts, clear rational approach, and the missionary zeal of its developer, the NDT approach has become the most widely used uniform approach of therapy worldwide. Based on the hierarchical concept of under- standing development, this approach focused first on correcting abnormal tone through the use of range-of-motion exercises, encouraging normal mo- tor patterns, and positioning. Second, abnormal primitive reflexes are ad- dressed through the use of extinction by repeated stimulation.7 Then, the third goal is to work on automatic reactions, such as placing a hand out in front when a fall is anticipated as in the parachute response. Another ex- ample is neck flexion as the child is falling backward to prevent the head from hitting. Altering sensory input by careful handling and positioning is also an important aspect to achieving the first three goals.4 This aspect in- cludes handling the child in patterns of normal movement and avoiding abnormal posturing. By having the child experience only normal movements, the brain will gradually remember the normal movements and forget the ab- normal postures used by the immature brain. The requirement of very early treatment, under the theory that the more immature the brain is, the more it can be influenced to develop normally, is also stressed in NDT therapy. Another important aspect of this treatment is the insistence that the parents learn, and at all times apply, these correct handling techniques. In the earlier years of the technique, there was great focus on idealized movements, such as the perfect way to come to a sitting position from lying; however, focus has more recently been on functional patterns that work for the child. The outcome of research has largely failed to show the benefits proposed by the founders of NDT techniques. Compared with other therapy techniques, or no therapy, there are few significant specific functional gains from the NDT approach.8–11 There is one study suggesting earlier therapy is better, as predicted by NDT therapy12; however, more recent and better-controlled studies show no impact of earlier therapy versus no early therapy.2, 13 There is also no evidence that NDT therapy can impact spasticity or primitive re- flexes or specifically improve higher motor functioning. Despite the marginal evidence for direct benefit, NDT still has a widespread use, with some ther- apists maintaining the missionary zeal of avoiding specific movements in a child, such as extensor posturing. These therapists also focus on the children having correct crawling before they can stand or walk, and having them walk correctly with a walker before they can walk independently. This kind of missionary rigidity is inappropriate, and parents can be informed that they do not need to feel guilty when things do not happen exactly as the therapist requests. Because the objective data supporting the efficacy of NDT treat- ment are marginal, there is very little role for enforcing these concepts rigidly, although they may be perfectly legitimate techniques to help teach children correct movement.

4. Therapy, Education, and Other Treatment Modalities 111 Sensory Motor Treatment Approach: The Rood Technique The sensory motor treatment approach was developed by Margaret Rood in the United States during the 1950s. Ms. Rood was trained as a physical and occupational therapist. This approach uses the same hierarchical under- standing of neuromotor development, and was developed in approximately the same time period, as the NDT protocols. The sensory motor technique depends heavily on tactile stimulation to facilitate movement. The overall goal of sensory motor therapy is to activate the movements at an autonomic level similar to how postural responses in normal individuals are activated. This activation requires superimposing mobility as produced by basic mus- cle responses onto stability, which is produced by tonic muscle responses. Sensory motor technique uses a series of eight clearly defined developmen- tal patterns, which children are to learn in sequence. These patterns are supine withdrawal, rolling over, pivot prone, neck co-contraction, elbow weight bearing, all four weight bearing, standing, and walking. This system incorporates many concepts similar to NDT but focuses much more on tac- tile stimulation and more specific functional movement patterns, as outlined in the eight steps of development. This technique was not developed for use in children, but rather for rehabilitation following brain injury. The Rood technique has been widely applied to children with CP; however, there are no reports that specifically document its efficacy. Many of the parameters of sensory motor therapy have been integrated into the NDT approach as it is currently used.4 Sensory Integration Treatment Approach: The Ayers Technique This treatment approach was developed in the 1970s by A.J. Ayers, who is trained as an occupational therapist. The basic goal of this therapy technique is to teach children how to integrate their sensory feedback and then produce useful and purposeful motor responses. The sensory integration approach tries to have these children access and integrate all their sensory input to use for functional gain. Activities such as catching a ball in different positions may be used as a way of stimulating and requiring integration of visual, vestibular, and joint proprioception feedback systems at the same time. This system’s underlying theory is that sensory input followed by appropriate motor function will contribute to the improved development of higher cor- tical motor sensory function. For young children, a single system stimulation may be used. Typical stimulations include vestibular stimulation in a swing and tactile stimulation by stroking, rubbing, massaging, or swaddling. Edu- cating the parents is recognized as an important aspect of the treatment, es- pecially in helping parents understand these children’s problems. However, most of the treatments are therapist directed or performed. This technique has also been applied to children with mental retardation and Down syn- drome. There are no papers documenting its efficacy in children with CP.4 The understanding of the importance of sensory integration, especially for children with tactile defensiveness, is usually incorporated in the modern therapy programs for children with CP. The Vojta Technique The Vojta technique was developed in Czechoslovakia by Dr. Vojta in the 1950s and 1960s. This approach is applied to young infants and requires an assessment of each infant by identifying four grades of central motor coor- dination disturbance. The goals of this approach are to prevent at-risk in- fants from developing CP and decrease the effect or severity of CP in those

112 Cerebral Palsy Management who do develop symptoms. The basic treatment is to use proprioceptive trig- ger points on the trunk and extremities to initiate reflex movement, which produces rolling, crawling, and other specific functions. These massages and stimulations have to be done every day by the family, and the treatment is believed to be of most benefit in the first or second year of life.14 The effi- cacy of the Vojta technique has been reported as positive in uncontrolled studies,15 even causing a dislocated hip to reduce16; however, in studies compared with other approaches, there is no positive effect.4, 17 This tech- nique continues to be widely practiced in Europe and Japan and is sometimes combined with acupuncture.18 The Vojta approach is used much less in North and South America. Patterning Therapy: Doman–Delacato Technique Patterning therapy was developed by G. Doman, a physical therapist; R. Do- man, M.D.; and C. Delacato, an educator. This therapy was based on the theory of recapitulation of species developed by Temple-Fay in the 1940s.4 This theory espouses that during development, immature activities such as reflex activities start first, and that these activities will stimulate higher brain functioning activities to develop. Furthermore, doing the activity frequently will imprint it on the brain and stimulate the brain to develop the next higher function. Sensory integration and stimulation are included as well. In reca- pitulation theory in combination with the hierarchical development theory, children turn over first, then crawl, which stimulates walking with all four limbs. This four-limb walking then stimulates the brain to develop bipedal standing, in turn stimulating intellectual development. This protocol also includes stimulating children to make vocal sounds and specific sensory stimulation, somewhat similar to the Vojta technique. The concept of reca- pitulation comes from the belief that children start out moving first by crawl- ing like a worm, then moving like a fish, followed by walking on all fours like a quadruped animal, until finally reaching the human phase of biped walking. A unique aspect of the patterning approach is a heavy focus on do- ing the therapy for many hours each day, 7 days a week, every week of the year. Parents are taught the techniques and are encouraged to mount a com- munity effort to get volunteers into the home to continue the therapy for almost all these children’s waking hours. This therapy requires a huge com- mitment by parents and often raises the parents’ hopes above what is real- istic to accomplish. The patterning approach to therapy was especially popular in the 1960s and 1970s in California and in the Philadelphia area where there were spe- cially developed centers. There is no scientific evidence that this approach yields any of the claimed benefits. We have had many patients whose par- ents pursued patterning therapy for a time at some level, usually less than recommended by the original approach. There is no evidence to suggest that neurologic imprinting works; however, the extensive amount of passive range of motion many of these children receive seems to prevent contracture development. Clearly, however, the benefits are not worth the cost in time and commitment for families. During the height of patterning’s popularity, there were many severely disappointed parents, several ending in parental suicides. The high rate of inappropriate expectations among parents leading to severe problems led many medical societies to issue statements condemn- ing patterning therapy.4, 19–21 Over the past 10 years, patterning therapy has almost disappeared, even in the region of Philadelphia, which was its last stronghold. Very little of this approach can be functionally applied, except to use it as an example of the damage that can be caused by an inappropri- ate therapy approach.

4. Therapy, Education, and Other Treatment Modalities 113 Conductive Education: Peto Technique Conductive education was developed in Budapest, Hungary, in the 1940s and 1950s by Andreas Peto as an educational technique for children with CP. In North America and the rest of Europe, this has come to be viewed as a physical therapy approach. The children were treated by conductors in a facility where they lived full time. The treatment was based on educational principles in which motor skills that children could just barely perform were identified, then they were assisted over and over again until the skill was learned. This approach is the same as is typically used to teach the multipli- cation tables. Conductive education also includes a great emphasis on in- stilling a sense of self-worth and a sense of accomplishment in the children. The motor skills were performed with a series of simple ladder-type devices that can be used to assist standing, stepping, walking, and even sitting ac- tivities. This approach is only applicable to individuals with some useful motor function, but not such a high level of function that they are essentially independent ambulators. Based on this indication, approximately 35% of children with CP are candidates for conductive education.22 Studies of the efficacy of conductive education suggest that it is equal to standard therapy programs,23 or may be slightly better at teaching motor skills.24, 25 The ele- ments of the program that can be incorporated into the day school setting are a useful addition, and this approach to therapy fits into the more recent trends, which are focused on educational techniques rather than preconceived theories of neurodevelopment. Electrical Stimulation Electrical stimulation has always been a basic modality of physical therapy practice. The physical therapy department at Guy’s Hospital in London in the 1840s was called the Electrical Department.26 Electrical stimulation in children with CP can be functional electrical stimulation (FES) with neuro- muscular electrical stimulation (NMES), or transcutaneous electrical nerve stimulation (TENS). Functional electrical stimulation means the electrical stimulation is done with the goal of causing a functional muscle contraction, such as stimulating the anterior tibialis muscle directly to cause a contrac- tion that produces dorsiflexion. The main uses of FES in children with CP are for wrist extension and ankle dorsiflexion. The muscle may also be acti- vated by stimulating transcutaneously or via percutaneous wires. A major problem with FES in children with intact sensory systems is the level of pain caused by this stimulation. In a group of individuals with hemiplegia, includ- ing mostly adults, the pericutaneous stimulation is less painful and better tolerated than transcutaneous stimulation.27 Most children are not greatly enthused by frequent stimulating wires being inserted into their muscles, which makes this pericutaneous technique of minimal use in children, al- though there have been a few positive reports from small case series.28–31 Another study found no improvement in gait, although passive dorsiflexion improved.32 Because of the pain caused by FES, its minimal use is primarily in adolescents because they may be able to tolerate the discomfort. There have been no studies that suggest any long-term benefit, and unless long-term benefit can be demonstrated, there is no reason to cause a significant amount of pain by doing a therapy session with electrical stimulation. Therapeutic electric stimulation (TES) is the use of electric stimulation below a level where muscle contraction occurs. The goal of TES is to stimu- late muscle hypertrophy and strength. This technique has been widely pro- moted by Pape et al.33 as a means of improving gross motor function, lo- comotion, and balance. This electrical stimulation is applied at night and is

114 Cerebral Palsy Management worn during sleep hours. The level of electrical stimulation is just at or be- low the level a child can feel. No muscle activity is initiated, and the theory for how this stimulation causes muscle hypertrophy is based on the alleged increased blood flow. Daytime TES has been proposed using slightly higher stimulation at a level at which children can feel the stimulation, but where it is not uncomfortable and causes no muscle contraction. This level would be used during therapy sessions to assist in motor learning.26 There has been little or no published literature to objectively evaluate TES except that pub- lished by the developers, and there is one study reporting that it was well tol- erated for 1 year of use.34 This technique has a potential for benefiting some children and would be an easy project for double-blind evaluation. Our experience is that there was very minimal functional benefit in the five or six children whom we followed while using TES over a period of time. At this time, there is no good clear indication for the use of either FES or TES in children with CP. Tone-Reducing Casts The concept of using casts as a method to decrease tone was initially pro- posed by Sussman and Kuszic.35 This technique consists of applying casts with toe extension and molding insole pressure points, which are supposed to decrease spasticity and cause the muscle to lengthen. This concept, vari- ously described as tone-reducing features, inhibitive casts, or serial casting, has been widely promoted in the physical therapy discipline; however, there is no objective evidence that it has any long-term benefit. Wearing casts and having frequent applications is very energy and time consuming for families. Whatever benefit these casts provide, the same can be gained from properly constructed ankle-foot arthroses (AFOs), as described in the section on or- thotics. There is little role for the use of casts in children with CP for the treatment of chronic spasticity or contractures. Muscle Strengthening There has been a long-held tradition that children with spasticity should not be encouraged to do muscle-strengthening exercises; however, excellent studies by Damiano et al.36, 37 have shown clear benefits from minimal strengthening work. As few as three times a week for a 6-week period of strengthening led to improvement in crouch gait.36 Although this was thought to be due to strengthening of the rectus femoris muscle, it was far more likely the result of the strengthening effect on the gastrocsoleus because crouch in midstance phase is not controlled by the rectus muscle. This work has, how- ever, clearly shown positive effects, which has also been our personal expe- rience. Based on this work, many therapy protocols, especially postoperative rehabilitation protocols, should include muscle strengthening as a compo- nent of the program. Enforced-Use Therapy Enforced-use therapy is based on the concept that potential function is not used because the functional component of the motor control is ignored through long-term disuse. This is the basis of the widespread use of eyepatch treatment of strabismus and amblyopia (“lazy eye”) in childhood. There have been periodic attempts to use this concept by short-term immobiliza- tion of the good arm in children with hemiplegia, but this practice has de- veloped a reputation for only frustrating the child. The current concept of enforced-use therapy involves total immobilization with aggressive therapy directed at learning such functional tasks as eating and dressing. We are us- ing this treatment in children with hemiplegia whose involved limb shows

4. Therapy, Education, and Other Treatment Modalities 115 promise of better functional use than the family is observing during daily ac- tivities at home. The current protocol uses a long arm cast, with the elbow flexed 70° to 80° so that the child cannot use the arm for feeding or reaching the face. The cast is left on for 4 weeks, during which time the child receives therapy 3 times a week. The parents also receive instructions to encouraging the child to be independent by forcing use of the hemiplegic arm. After the cast is removed, therapy is recommended for an additional 4 to 8 weeks. Based on limited experience, parents are reporting significant improvements in functional use of the limb. There does not seem to be a place for this ap- proach in the leg, because walking by nature requires both limbs and is an enforced-use function. This approach to enforced-use therapy in children with cerebral palsy is new, and many questions need to be answered before specific recommendations for routine use can be formulated. No data cur- rently exists to determine at what age child this works best, what level of physical disability responds best or worst, how long the benefit lasts, if there is a role for repeating the immobilization of the unaffected arm, or how long the arm should be immobilized. Based on current knowledge, enforced-use therapy looks like a useful treatment intervention, and many of the questions will likely be answered over the next several years to allow much better def- inition of the specific protocol and outcome expectations. A Current Physical Therapy Approach Current pediatric physical therapists are moving toward an intellectual con- struct of being a coach or teacher of a child’s motor system instead of a molder of the brain as the child develops. This modern approach more of- ten uses the understanding of dynamic motor control to structure tasks and change motor patterns. This new approach requires a broader view of the child and has to include an understanding of how he or she is functioning in the home, family, and school environment. This approach also places the therapist in a much better position to bridge the gap between the educational and medical systems. Another important focus required in this role as teacher or coach is a realistic assessment of the child’s ability. For example, teachers have to routinely make realistic assessments concerning the functional abil- ity of a child to learn specific material. Normal children have a widely vari- able ability to learn a level of mathematics at each age level, and teachers have to be aware of the level of the individual child. Some children in fourth grade may still be struggling to learn addition, while others are ready to learn geometry, but none would be ready to do calculus. In a community popula- tion of children, many will never be able to develop enough math skills to learn advanced calculus. Using this same analogy, the physical therapist needs to have a good ability to understand what the possibilities are for each individual child, while at the same time continuing to motivate the child to improve his motor skills. Understanding the child’s functional possibilities means the therapist can avoid frustrating them with unreasonable demands and help their parents understand reasonable functional goals for the child. The strategy for physical therapy is very dependent on age and functional ability.6 The general treatment approach varies significantly over the age spectrum. Added to the age appropriateness, the therapy plan should have specific objective, quantifiable short-term goals. Such goals include improv- ing how long the child can stand on one leg, learning to jump, using a walker independently, or improving a specific amount on a global measure such as the Gross Motor Function Measure (GMFM). These specific short-term goals can help the therapist, child, and parents judge progress. Also, this type of goal setting is an important part in the reimbursement of therapy services

116 Cerebral Palsy Management from insurance companies. Another part of the treatment plan includes teach- ing the family how to handle the child, teaching the child and family an ex- ercise program, assessing the general function of the family in the home environment, and helping the family understand the long-term expectations of the child. A difficult aspect of the therapist’s treatment plan is integrating the child’s other medical treatments with fragmented medical care. The time constraint, which does not give the therapist time to attend medical ap- pointments, leaves many therapists to gather this information from parents. Obtaining medical notes from physician visits can be another mechanism for the therapist to stay informed.6 Specific Age Periods Infant There has been considerable focus on the impact of early childhood in- fant stimulation programs, especially for infants from newborn intensive care units who are at risk for developing CP. The treatment program at this age, which is carried out by either a physical or occupational therapist, usu- ally includes a combination of stimulation through handling the children, sensory stimulation through positional changes, and getting the children into correct seating. Many of the techniques used in infant stimulation ap- proaches are combinations of NDT, sensory motor, and sensory integration approaches. Therapy frequency at this age may be two or three times a week; however, care should be taken not to place too high a burden on new par- ents with many medical visits. We have seen one very frustrated mother who was scheduled to see 21 medical practitioners for an 18-month-old child who had been discharged from an intensive care unit (Table 4.1). This num- ber is far too much of a burden, and the therapists are in a good position to sense this and help parents decide what is reasonable. This is especially help- ful when there are frequent team-generated treatment plans saying, for ex- ample, that a child should have four physical therapy treatment sessions in a week; however, due to the therapists’ schedules, he will be scheduled to see three different therapists in 1 week. This is the worst kind of fragmented care, and it is very frustrating to parents. To parents and children, therapy is an intimate relationship and there is little benefit when it is scheduled based on whoever can be found to do therapy that day. Many of these par- ents will become very confused after hearing slightly different assessments from each therapist, often with different words to describe the same concern. This scenario is to be avoided; it is far better to have fewer sessions with a consistent therapist. The efficacy of early childhood therapy has not been well documented objectively, with most studies showing no or marginal measurable benefit.4, 13, 38, 39 Early Childhood At 18 to 24 months of age, there is usually no longer any question as to the diagnosis of CP. This period, from 1.5 to 5 years of age, is the age of pri- mary motor learning and the time when therapy potentially has the most impact. This time continues to be crucial in the parents’ coming to under- stand their children’s disabilities as the impairments are slowly becoming more apparent. A close, consistent relationship with a single therapist is es- pecially beneficial during this time. This is the period where setting concrete short-term goals works well because of the children’s rapid maturation, and this is also when much of children’s play and free exploration time is motor based if they have sufficient motor ability for self movement. There are many developing adaptive equipment needs that also have to be assessed, fitted, and ordered for the children during this phase. In early childhood, the phys-

4. Therapy, Education, and Other Treatment Modalities 117 Table 4.1. All the professionals treating a 2-year-old child who had a prolonged stay in the newborn intensive care unit. 1. Nurses evaluating the child but providing no direct care • Home visiting nurse • Special high-risk newborn program nurse • School nurse 2. Physical therapist • Home visiting therapist • Two school therapists 3. Occupational therapist • School therapist 4. Speech therapist • School therapist • Special feeding therapist • Home visiting therapist 5. Social workers • Home visiting social worker • Medical counseling social worker for high-risk newborns 6. Psychologist 7. Special coordinators • Neonatal special program coordinator • Early childhood program coordinator 8. Doctors • General pediatrician • Developmental pediatrician • Neonatologist • Neurologist • Orthopaedist • Neurosurgeon • Ophthalmologist The mother was visiting 21 medical professionals, many at least once a week, who were often giving the mother conflicting recommendations. ical therapist will be focusing on gross motor skills, such as walking, and the occupational therapist will focus on fine motor skills, such as writing, using scissors, and self-feeding. Adaptive seating is important in this period, es- pecially for feeding, toileting, and floor sitting. In establishing a treatment approach, most therapists borrow from the three predominant approaches, combined with using a model of teaching a task that involves cognitive understanding and repetition. This early childhood period is also a time when concepts from dynamic motor theory can be employed, with the goal of trying to alter the system in ways that will allow a task to find a new chaotic attractor.40 An example of this might be using an unstable support, such as a cane in walking, to see if a child will find a better movement pat- tern compared with the pattern used in a walker in which he can go fast, but with very uncoordinated lower extremities. Therapy frequency at this age is variable, usually between two to four sessions per week while progress is documented. Some children will develop periods of frustration, and it may be better to give them a break of several months, and then restart therapy again. Efficacy of early childhood therapy has also been difficult to prove, although an educational model has demonstrated some improvement,41 as has an NDT approach.42 Middle Childhood Middle childhood, from approximately 5 to 10 years of age, is when the focus of children’s development is shifting from primary motor to cognitive

118 Cerebral Palsy Management learning. Children with good cognitive function will be transitioning into school environments, where gradually more time is taken up with cognitive learning. In this period, therapy routines should be significantly reduced, especially if they start to interfere with cognitive learning. Many children at this age can have the frequency of therapy reduced to observer status, or even discontinued if gross motor skills have plateaued. This time is also when very specific treatment goals are addressed, such as learning to use crutches in- stead of a walker. In this approach, a period of intensive crutch training therapy would be scheduled with the end goal being teaching these children to use crutches. Another important task at this age is the transition to regu- lar sports activities in the community. The therapist is in an excellent posi- tion to recommend an appropriate sport activity based on an individual child’s functional mobility and community availability. Sport activities that are useful to consider are horseback riding, swimming, martial arts, skating, dancing, T-ball, softball, and bicycling. For children with limited cognitive ability, focus continues to be on motor learning during middle childhood. This is the age when many children with limited cognitive function and mild CP learn to walk. The same treatment approach used in early childhood can be continued into middle childhood for this group. Frequency of therapy may vary from one to three times per week. Efficacy of therapy for this age group has not been specifically reported. Adolescence For individuals with good cognitive function, this period from 10 to 16 years focuses on cognitive training and there is no role for ongoing main- tenance therapy, except to address specific disabilities with a goal-focused therapeutic approach at a time when there is no interference with age- appropriate cognitive learning. For a few motivated individuals, this period during adolescent growth can be a time to push to new levels of indepen- dence. However, almost no situation exists where there is a justification for children in normal classrooms to be removed from, for example, spelling class every week to receive therapy. Clearly, the long-term benefit of spelling class is much greater than the benefit of therapy to the point where it would be unethical to even entertain this kind of scenario. Therefore, in- tellectually normal children, regardless of their physical disabilities, should not be routinely removed from academic classes to receive therapy. How- ever, this is a time period when teaching specific tasks, using a cognitive- based approach, can be very beneficial. This teaching will be especially beneficial if they are tasks that children will integrate into their activities of daily living and continue to use. Once learned, adolescents maintain these tasks long term.8 Another important aspect of physical therapy for adoles- cents is learning to be responsible for their own stretching and physical ac- tivity. During adolescence is also the time when long-term functional motor skills can be defined, so it is important to help the family and the patient to understand these and develop plans to maximize independence within the context of these limitations. Whenever possible, the therapist should be fos- tering independence by encouraging the individual to get involved in ap- propriate physical activities and sports. Adolescents with limited cognitive ability will continue to focus on motor learning, and on rare occasions, it is possible to teach children to walk independently up to age 11 or 12 years. This means children with severe mental retardation should continue to be stimulated toward motor activities as well as other stimulation. Frequency of therapy is variable and almost always in the milieu of the educational system.

4. Therapy, Education, and Other Treatment Modalities 119 Young Adults By young adulthood, there is little role for ongoing chronic physical ther- apy except to address specific functional goals. Individuals with good cog- nitive function should be doing their own stretching and physical activity routine if physically able, just as individuals with no disability are expected to take on their own responsibility for health and well-being. For individ- uals with limited cognitive ability, caretakers should be instructed on routine stretching and having a program of physical activity. Therapy Settings Child’s Home Home-based therapy is advantageous for the therapist to evaluate the home environment and set appropriate goals based on this environment. The home is often used for infant and early childhood therapy because children are comfortable here and it is convenient for new parents. The home setting is also useful for therapy immediately after surgery, when children may be un- comfortable moving into an automobile, or because their size and decreased function in the postoperative period makes physically moving them very dif- ficult. The difficulty with home-based therapy is the limited availability of equipment and space in which to conduct the therapy. Also, much of the therapist’s time is taken up with travel, which increases the cost of the ther- apy. Because of the increased cost, insurance companies will usually not pay for home therapy unless there is an extenuating specific reason why home therapy is required over therapy in a facility. Medical, Clinic, or Outpatient Hospital Department The ideal location for most therapy is an established physical or occupational therapy department. This location is especially important in early and mid- dle childhood where gait training is the primary focus. This location is also ideal for postoperative rehabilitation because it provides the therapist with the equipment and space needed to do the therapy. Also, children come to this location expecting to work at therapy, and it is cost effective for the ther- apist’s time. However, it may not be cost effective for the family, especially a family in which both parents work and the only times to do the therapy are during the daytime working hours. Inpatient Hospital Rehabilitation Before 1990, inpatient rehabilitation programs were commonly used for in- dividuals with CP, especially for postoperative rehabilitation. These programs have decreased greatly because of the refusal of insurance companies to pay for the care as there is no good evidence that inpatient therapy is better than outpatient therapy. Today, the role of inpatient rehabilitation therapy is limited to very specific situations where multiple disciplines are needed in a concentrated time period. Such an example might be an individual with good cognitive function who has limited ability to receive therapy during the school year because of academic learning constraints, but would benefit from intensive therapy to assist with independence gaining skills such as self- dressing, self-bathing, improved walking, and wheelchair transfers. For the individual in late childhood or adolescence, an intensive 2- to 4-week in- patient therapy program can provide significant long-term yields. For this to be successful and for insurance companies to pay, a very detailed and specific goal has to be defined before the therapy stay. Both children and

120 Cerebral Palsy Management Figure 4.1. The MOVE Program is an ed- parents need to have a desire and commitment to make the goals and then ucation-based program that depends heavily to follow through with the goals at home after the therapy admission. on assistive devices to teach mobility. These devices demonstrate the increasing overlap School-Based Therapy of the techniques used by therapists and educators. After age 3 years, many children with CP spend most of time during the day in a school environment and therapy is often provided in school. There has been a tendency to try to segregate educational therapy from medical therapy. Educational therapy is defined as therapy that furthers children’s educational goals, whereas medical therapy is directed at treating medical impairments. In some situations, these differences are clear. For example, a child who needs postoperative rehabilitation therapy clearly falls into the medically required therapy group. On the other hand, the goal of sitting in a desk chair and holding a pencil to write a school lesson is clearly a physi- cal skill that has to be addressed in some way for effective classroom learn- ing to occur. There are, however, many therapies that fall between these two extremes, and it seems the definition is determined most by the availability of a therapist and the attempt of school administrations to provide minimum or maximum services. The extremes range from schools that will provide increased therapy even to help with postoperative rehabilitation, to the other extreme of schools that define any specific therapy recommended from an orthopaedist as medically based therapy. This definition of what is educational therapy rests with the educational system and not the medical system, although developmental pediatricians are seen as experts on special education and can give medical opinions for edu- cation that the school system has to consider. School-based therapy is ideal for children and families because families are not burdened with having to take children to another facility or another appointment. Most educational- based therapy is low intensity and low frequency. Often, 30 minutes once a week is the planned therapy intervention. However, educational therapy can be the focus of the educational plans for children with limited cognitive abilities. A new approach called the Mobility Opportunities Via Education (MOVE) was developed by Linda Bidade in Bakersfield, CA, as a special ed- ucation teaching program, and is being adopted in some schools. Through the use of adaptive equipment, the MOVE program is able to provide sig- nificant periods of time for weight bearing, even for large adolescents and young adults (Figure 4.1). These devices include standers, walkers, and var- ious other positioning devices that are used throughout the day, directed at a specific overall motor stimulation program. The real focus of this program is to allow the children to acquire physical skills, such as standing, that will allow them to do weightbearing transfers and to maximize an indivdual’s physical function in the community. This educational therapy approach seems most appropriate for children and adolescents with severe mental re- tardation and limited physical abilities; however, it is very important that the therapy not interfere with cognitive educational classes, especially for indi- viduals with good cognitive function. Special Setting Special environments in which physical therapy also provides a valuable service include seating clinics where physical or occupational therapists serve as primary clinicians in the role of evaluating a child’s specific seating needs. The gait analysis laboratory is another environment in which the therapist usually does most of the direct patient contact testing, such as the examina- tion and placement of markers and EMG electrodes. After the data have been compiled, the therapist is a key member of the data interpretation team.

4. Therapy, Education, and Other Treatment Modalities 121 Occupational Therapy The theories of therapy practice for occupational therapy mirror those of physical therapy. Many of the basic therapy approaches, such as the sensory motor and sensory integrative approach, were developed by occupational therapists and are the basis of much modern occupational therapy practice. The focus of occupational and physical therapy in early childhood and in the infant period greatly overlap. As a child gains more motor function, the oc- cupational therapist’s focus shifts to functional activities of daily living and fine motor skills with the upper extremities. Upper extremity splinting to improve function or prevent contractures are also important aspects of oc- cupational therapy practice. The efficacy of occupational therapy also mirrors that of physical therapy, in which it has been difficult to document clear objective benefits. The focus of occupational therapy is also very dependent on the age and functional ability of an individual child. The therapy plan is similar to physical therapy, in which a therapist uses a learning approach based on a specific task as the goal. The goal is planned from an under- standing of a child’s function, the family structure, and the physical environ- ment in which the child lives. Age-Specific Goals Early Childhood The focus shifts during early childhood from initially working on activities such as self-feeding and removing clothes, to fine motor skills such as using scissors and early writing skills. Middle Childhood Fine motor skills development, especially writing, self-dressing, and toilet training, if it is has not yet occurred, are the main focus. During this time, an assessment can be made of a child’s ability to be a functional writer, and if it is determined that he cannot be a functional writer, an augmentative writing device should be prescribed. Typically, this would mean getting a computer and working with an effective interface with the computer to allow this to become the child’s main output device. Another alternative may be the use of a dictaphone or a full-time aide who will do the writing for even more physically challenged children. The occupational therapist in the school set- ting often is the primary therapist working on these problems. Adolescence The main focus in adolescence are issues of independence. Based on indi- vidual evaluations, attempts are made for individuals to learn to do all their self-care needs, such as dressing, bathing, and cooking their own food. This is also when families start to understand what the individuals’ specific, real- istic, long-term goals for personal independence and self-care will be. For other children, it may be a time to focus on specific goals that are limiting their ability to be fully independent. For example, a child may be able to do all her own dressing, except putting on shoes. A specific therapy program aimed at solving this problem should be undertaken. Young Adulthood A major goal in young adulthood is to determine if an individual can drive a car. Many specific driving programs have been set up, often in coordination

122 Cerebral Palsy Management with occupational therapy programs. Also, an assessment of occupational options should be occurring, which is another area of practice where the occupational therapist usually has significant input. During this time a voca- tional assessment is performed for those individuals with adequate cognitive function. Special Setting Occupational therapists work in seating clinics and feeding clinics. Their role in these clinics is to provide clinical expertise in evaluating children and recommend appropriate adaptations. In feeding clinics, occupational thera- pists may also be involved in feeding therapy programs. Occupational ther- apists have as large a role in the school therapy setting as physical therapists. Speech Therapy The speech therapist’s main role is to address the speech and augmentative communication needs of children. Also, feeding and swallowing malfunctions are evaluated by speech therapists. Radiographic swallowing studies are often performed by a speech therapist in coordination with a radiologist. For children with complex oral motor dysfunction, many pediatric hospitals have multidisciplinary feeding clinics in which the speech therapist is a key member. Usually, these clinics are directed by developmental pediatricians and do not have much direct interaction with the orthopaedic treatment, except when maximum oral motor function is significantly impacted by a child’s seating.43, 44 There may even be an impact on general motor function by altering oral motor function through the use of oral orthotics that en- hance swallowing.45, 46 This significant impact on general motor function has not been confirmed independent of the developer of the oral orthotic. Therapist Assistants There are special associate degree programs that train individuals in physi- cal and occupational therapy. These individuals are called physical therapist assistants (PTA) or occupational therapist assistants (OTA). These assistants may carry out a treatment program as outlined under the direction of a li- censed physical or occupational therapist. The level of required supervision varies from state to state; however, a PTA or OTA may not practice indepen- dent of a fully licensed therapist. The function of the therapist assistant is very similar to a physician assistant’s relationship with the supervising physi- cian. Therapy departments also use therapy aides who typically have on-the- job training to do activities only under the direct supervision of a licensed therapist. Physical Therapist and Orthopaedist Relationship The two main medical practitioners in the treatment of children’s motor im- pairments are the primary therapist and the physician. This team is most commonly a physical therapist and a pediatric orthopaedist; however, it may be an occupational therapist and a physiatrist. We primarily address the

4. Therapy, Education, and Other Treatment Modalities 123 orthopaedic and physical therapy relationship, but the context is similar for the other disciplines. The orthopaedist’s experience is usually based on many children with whom he has had superficial contact. This experience is re- flected in the orthopaedic literature of CP, in which most published papers are based on specific problems, such as hip dislocations or scoliosis, and in- clude large numbers of patients, often 50 to 100 cases. The experience of the physical therapist is usually with of a few individual children, in much greater detail. This experience is also reflected in the physical therapy pub- lished literature, which often includes case studies or series of 3 to 10 chil- dren. Based on this experience difference, each discipline develops a different perspective. The physical therapist often feels that the orthopaedist does not understand this specific individual child, while the orthopaedist feels that the physical therapist has a narrow focus not based on a wide enough experi- ence. These different perspectives require that the physical therapist and the orthopaedist have discussions where each is honest about the perspective from which the decisions are being made. By having open discussions, chil- dren’s best interests are served because both perspectives together usually yield the best treatment plan. Often, orthopaedists are deceived by short examinations of a child who is not performing in the typical and normal way. The physical therapist has a much better perspective on how the child func- tions day in and day out. It is, after all, the typical daily function that the orthopaedist wants to evaluate and the basis from which decisions should be made about bracing, surgery, or seating. Alternately, the physical therapy approach of placing great weight on single case study experience does not work well in orthopaedic decision making because one bad outcome based on a surgical complication should not be used to preclude considering that surgery. Yet, it is this typical case experience approach in which a therapist will say, “I once saw a child who had this operation and he did very poorly, so we would never allow any child we are treating to have that operation.” This approach would lead a surgeon to never do surgery, and is not based on scientific principles. This is the area where the therapist needs to hear from the orthopaedist what a surgical procedure is expected to do and the complication risks that are involved. Children’s medical care is greatly benefited by good, open communica- tion between the therapist and the physician. This communication, however, is often difficult to practice in real life. The telephone seems like the ideal instrument; however, finding times when both the therapist and the or- thopaedist are available to come to the telephone is often difficult. Other alternatives should be considered as well, such as the use of e-mail, letters, and, whenever possible, direct face-to-face meetings. There are occasional families who request that the physician not communicate with their child’s therapist. If this therapist is, for example, a school-based therapist with whom the family has no direct contact (meaning the school hired the thera- pist and the family has no say in who this person is), this request may be valid at some level. We still try to convince families that it would be in their child’s best interest to have communication between the therapist and physi- cian. However, if the therapist is a primary therapist that the family is en- gaging to see the child, and the same family has also chosen to see us as the orthopaedist, the request that the therapist and the orthopaedist not com- municate is inappropriate. If the family does not agree that the therapist and physician can communicate, they should go to either a different therapist or a different orthopaedist. Almost all families will understand the importance of this communication if it is discussed in the context of the benefits it pro- vides to the child.

124 Cerebral Palsy Management Education The integration of children with disabilities in the educational system was variable in the United States until 1975 when Federal Law PL 94-142, entitled “The Education for All Handicapped Children Act,” was passed. This law mandated free and appropriate public education for all children, including those with disabilities. This law led to the building of many schools for spe- cial education. This bill has been reauthorized in various forms and with many additions. In 1990, it was retitled “The Individuals with Disabilities Education Act” (PL 010-476). This bill and subsequent amendments, espe- cially PL 99-457 and PL 94-142, have included infants, toddlers, and pre- schoolers with disabilities as part of the educational bill. Most recently, part C of PL 105-17 has outlined the specific state-run services including early intervention that have to be provided for children from birth to age 3 years and states that children after age 3 years must be served by the school system. These acts require that the states provide ap- propriate education and associated services, which include occupational, physical, and speech therapy as needed for children to meet their educational goals. The school must also provide whatever adaptive equipment is needed for children to meet the educational goals set out. This law also states that these goals have to be individually defined in a structured individual educa- tion program (IEP) on a yearly basis, and that parents must be given feedback on how their children are progressing toward these goals on a frequency at least as often as other children are given report cards. The annual IEP has to include a definition of the specific special education program, the special services the child will receive, meaning therapies, and the adaptive equip- ment that is needed. The IEP must be explained to parents and caretakers in an annual meeting, and the parents or caretakers must agree that it is ap- propriate. If the parents disagree with the IEP as it is stated, they may try to negotiate. If this negotiation fails, they may appeal through an appeal struc- ture that is defined in the special education act. The special education act also states that children’s education should be in the least restrictive envi- ronment, which means that whenever possible a child should be in a normal classroom with age-matched peers. These federal education laws have greatly improved the educational opportunities for children with CP. These laws are administered by states but interpreted and executed by local school systems; therefore, there is great variation in the quality of the educational experience individual children receive. Because of the significant subjective evaluation involved and the interpretation of the legal code, there is much more variation in the educational experience of children with dis- abilities than the educational experience of normal children; this is true even though there is great variation in the educational opportunities in public schools across the United States. The pediatric orthopaedist has various levels of contact with the educational system and has to understand the gen- eral milieu of special education. In addition, the orthopaedist should have a general understanding of the local special education system in which he is practicing. By nature of the special education system as it is defined in the federal code, there are many areas of frequent conflict that involve the or- thopaedist directly.47 These areas of conflict are discussed in the following paragraphs. Separation of Education and Medical Practice Education and medical practice are separate in our society at almost every level, and this separation has led to frequent conflicts in the area of special

4. Therapy, Education, and Other Treatment Modalities 125 education. More specifically, special education law states that the educa- tional system must pay for medical evaluations that are needed to determine children’s educational goals and functions. The school system has to provide adaptive devices that are needed for children to gain an educational experi- ence; however, the educational system does not need to purchase medical treatment required to maximize children’s educational goals. The eye exam- ination is a typical examination that the educational system is required to perform because visual acuity may be a major obstacle to a child’s learning ability. If the eye examination demonstrates that the child needs eyeglasses, the school system has to pay for the glasses if the glasses are interpreted to be adaptive devices. However, if the glasses are interpreted to be medical de- vices, the educational system does not pay. This exact example has been lit- igated in several locations in various courts, and decisions have been handed down in both directions. These types of circumstances have spawned a whole legal subspecialty to help interpret and litigate areas of special education law. What Is Medical Equipment and What Is an Adaptive Device? The definition from the perspective of the educational system of what is ed- ucational and what is medical varies from state to state and even from school district to school district based on many reasons. Financial considerations in the educational system are often part of the reason to determine how ag- gressively the educational system pursues trying to shift costs to the medical payers. In general, wheelchairs, walking aids, and orthotics are considered medical equipment. Special desk seating, communication devices, writing aids, standers, and positioning devices used by children at school are con- sidered educational devices. Devices such as standers or other adaptive equipment such as tricycles that children can also use at home may fall into either category. Prescriptions A major impact on the pediatric orthopaedist who manages children with CP is the need for many prescriptions, especially related to their needs in school. Although there is variability from state to state, most states require licensed therapists to provide therapeutic services only under a doctor’s or- der. With this requirement, even therapists practicing in a school environ- ment doing therapy to further children’s education need to have a physician’s prescription. If that prescription comes from an orthopaedist and is very spe- cific for range of motion, gait training, or postoperative rehabilitation needs, with specific frequency requirements, the school administration can legiti- mately conclude that it is medically needed rehabilitation therapy and refuse to provide the services. The prescription that works best in the school envi- ronment is to order educationally based therapy and include specific restric- tions and suggestions, such as a child’s need to be in a stander every day for a certain maximum period of time. The physician needs to understand his proper role as related to the edu- cational system. The physician also needs to be able to clearly articulate that role to parents. A common parental concern is that the school is not pro- viding adequate therapy to their child. In some situations this concern is true, and in others, the parents’ enthusiasm for therapy and the expectations of how much benefit the therapy will provide are misunderstood. The ortho- paedist should play a role in explaining to the parents that therapy is not indicated if that is his opinion, but he can also explain his role in ordering school therapy when he believes more therapy is required but the school

126 Cerebral Palsy Management disagrees. The parents’ usual response to the physician is, “You wrote the prescription, so the school has to do what you said.” A typical example of a parent demanding therapy and the school dis- agreeing is a child with good cognitive ability who is an independent ambu- lator. In general, a child with this level of motor function probably has more long-term side effects from therapy than benefits, especially if the therapy interferes with any academic classroom work. In this situation, the parents need to be educated and the school decision needs to be reinforced with the parents. The opposite example occurs with a middle school child with severe quadriplegia, who has made no motor gains over several years, and the school IEP plans to maintain motor function with classroom activities pro- vided by a teacher and a schoolroom teacher’s aide. The educator believes that the focus of the this child’s educational goals should be teaching him to use augmentative communication. The parents disagree and want everything to occur. These are difficult subjective decisions and the orthopaedist may find himself siding with the parents; however, an aggressive response by letter or phone call will not help the parents’ position because it will only give the school administration physical evidence that this need is medical rehabilita- tion. It is much more helpful for the orthopaedist to recognize that this is an educational decision, and offer the parents and school additional data as a way of helping the school and parents negotiate the disagreement. This ne- gotiation will be more profitable with this approach than getting involved with a litigation. Another major area where prescription need arises is obtaining adaptive equipment. All adaptive equipment purchased through medical reimburse- ment sources, such as private insurance or Medicaid, must include a medical prescription and usually a letter of medical need. Examples include orthotics, wheelchairs, and standers. If devices are purchased with educational dollars, no prescriptions are needed; these would typically include writing desks and computers used as augmentative writing devices. Many devices fall in be- tween, such as augmentative communication, classroom standers, and floor positioning devices. The specifics of who pays for what may be negotiated at the state level between agencies, or in other states, debated at length, often to the major advantage only of the legal profession. Physician–Educator Relationship In almost all school environments in special education, administrators really try to provide the best services for the children in their care. A major con- straint many special education systems work under is poor funding; how- ever, cost may not legally be considered in determining what children need. The pediatric orthopaedist can be very helpful to further a child’s education by providing documentation and perscriptions for the required services but at the same time must have a clear understanding of their limited role in determining the child’s program. Annual visits to special schools are very beneficial to both the educator and the medical care provider. This kind of interaction helps both to understand the different environments, and it is helpful to have time for face-to-face conversation. The professionals in the educational system are very interested in staying up to date on advancing medical practice. Parents often ask for medical advice from the educational staff, just as parents ask educational questions from the medical staff. This kind of bilateral educational and communication process between the sys- tems can only help children and families in the overall goal of allowing them to become all they can be.

4. Therapy, Education, and Other Treatment Modalities 127 Inclusive Education The special education legislation currently requires that these children be educated in the least restrictive environment. The goal of this education is to encourage placement of these children in classrooms with their peers when- ever possible.47 This has also become a major political issue, with some parents narrowly interpreting this code to mean all children have to be in standard classrooms, with special education support provided in the class- room in the presence of normal children. The concept of this goal is valid but has limits. Because this is a very active current issue, parents frequently want to enlist the help or opinion of their orthopaedist. For many children, the correct placement is clear; for example, a child with ambulatory diplegia and good cognitive function should be in a regular classroom with their age- matched peers. Also, it is clear that a child who requires frequent nursing attention because of respiratory dysfunction and has no recognized accessible cognitive function is not served well in a standard classroom. This child also becomes a distraction to other children in the room who are trying to learn. Neither the child with the disability nor his age-matched peers gain anything from this experience. This movement toward education in the least restric- tive environment has led to a great reduction in the number of special educa- tion schools that were built as a result of the 1975 legislation. Some children with severe impairments are placed in neighborhood schools and are being cared for by an on-the-job trained aide who sits with them in a classroom, with some occasional therapy services provided in the school. The therapists who provide this service often have little experience in working with chil- dren with CP. Deciding which child is best served in a special school and which child is best served in a neighborhood school is a difficult decision for parents and children. Some of this decision depends on what services are available in the community. In general, it is much less expensive to provide services in the neighborhood school system, even for children who need a great deal of care, than providing for this care in a separate special education facility. The com- bination of a cheaper solution for the educational system and a politically active parent-based movement makes this concept of educating children in the least restrictive environment a very strong political and social movement. This movement has clearly benefited many children. As with most social movements, there are those children who have been hurt by the movement as well, and a basic directive of the early special education legislation was to provide for an individualized education program that best meets the indi- vidual child and family’s needs. The role of the orthopaedist in this debate is marginal, but he should have an understanding of the issues involved as this often has a profound effect upon the children and their families. Case ex- amples can help to demonstrate the impact these decisions have on some children (Cases 4.1, 4.2). Transitional Planning and Guardianship The special education legislation also requires the educational system to plan for transition from the school system, whose responsibility ends at age 21 years or with graduation from high school. This phase includes transition to sheltered workshops or adult day care as well as more traditional work and advanced educational opportunities, based on the abilities of each individ- ual. Also, this transitional planning is supposed to include some education of the parents about the need to obtain guardianship for the young adult if

128 Cerebral Palsy Management Case 4.1 Chandra Chandra was a 12-year-old girl with combined spastic tered puberty, she became depressed and started having and athetoid pattern quadriplegia who had no oral behavioral problems. After grade eight, her parents elected speech and was totally dependent for all activities of daily to have her move to a special education school that had living. Cognitive function was near age appropriate. Her an extremely high level of technical expertise. Her de- parents felt strongly that she should be in a regular class- pression gradually lifted, her behavior stabilized, and she room with a teacher’s aid and other required therapeutic became a school leader over the next 5 years of her high support. Over several years, especially as Chandra en- school experience. it is required.47 For some environments, in facilities such as the Nemours Foundation and the Shriner’s Hospital System, individuals also have to tran- sition their medical care to adult services at this same time. This is a very stressful time for parents and young adults with CP. If the pediatric ortho- paedic care has to end at age 21 years, this discussion should start several years earlier and the parents should be encouraged to see this as part of the same transition that the educational system is also working toward. The need for guardianship must also be addressed for those individuals whose cognitive level precludes them from managing their own affairs. At age 18 years, individuals are considered adults, and from strict legal inter- pretations, if the individual has not been legally judged incompetent and a guardian assigned, the individual’s guardianship rests with the State. This issue has special relevance for individuals who are clearly incompetent and are in need of a surgical procedure. Before age 18 years, a parent has to sign; however, after age 18 years, many parents think that it is clear that they will continue to be the guardian and to sign operative consents and other legal mat- ters. The parents need to be informed that they have to get a court-ordered guardianship. The court will often need a statement from the physician, which Case 4.2 Mary A very similar case example is Mary, a girl who was in a problems had been apparent before entering regular special school until grade eight, then she transferred to a high school but they became more severe. The whole high regular high school. Mary had a spastic quadriplegia and school career was a very traumatic experience for Mary was almost totally dependent in activities of daily living; and her family. It was not certain that this adolescent however, she was completely verbal. Her cognitive abil- trauma would have been avoided in a special school en- ity tested at marginal mental retardation. In her special vironment; however, as demonstrated by these two case school, she was a leader among the students because of examples, inclusion in a regular school may create prob- her excellent verbal abilities. Upon transfer to the regu- lems and does not universally benefit all students, as lar high school, she became depressed and developed sig- much of the current politictically correct discussion would nificant behavioral problems. Some of the behavioral suggest.

4. Therapy, Education, and Other Treatment Modalities 129 is easy in many individuals and reasonable for the orthopaedist to provide the court in clear cases of incompetency. When the situation is not clear, such as a child who can speak and seems reasonable but has some mental retar- dation, it is better for the court to obtain more expert opinion. In these sit- uations, it is better to allow the psychologic and psychiatric experts make the determination. If an individual who is over 18 years has a medical problem that requires surgery, the physician’s knowledge of the family and the indi- vidual with CP often means that it is all right to proceed. However, if there is a legal challenge from another family member, or there is some other lia- bility issue, the court may find that the person who signed the consent was not a legitimate guardian, therefore putting the surgeon at risk for having done an operation without a valid consent. Also, if there is any question about the competency of the individual who is over 18 years, and the indi- vidual has not been adjudicated, the best action is to obtain the signature of both the patient who will have the surgery and the accompanying parent. Other Treatment Modalities There are many different treatment modalities pursued by families of chil- dren with CP. Some of these modalities are closely coordinated with or in- corporated into standard therapy services. Other treatments tend to be more focused in the area of sport and athletic activities. The real advantage of the athletic activities, which are usually done in the individual’s community with age-matched peers or family members, is the integration of the child into the normal community activities. Therapy services, even in a school envi- ronment, always have some sense of medical treatment and involve only the child with the disability. Some of these activities are explored in the follow- ing pages. Hippotherapy Providing therapy treatment using horseback riding is called hippotherapy (Figure 4.2). Hippotherapy has a long history in Europe, with one review in 1975 reporting more than 150,000 therapy sessions.48 The vertical movements Figure 4.2. Hippotherapy is performed usu- ally under the direction of a physical therapist using horseback riding. This therapy is usu- ally performed in the location of a horse barn or farm, which has the additional advantage of providing the child with a different op- portunity for social stimulation.

130 Cerebral Palsy Management of horseback riding are thought to provide sensory stimulus, which decreases muscle tone. The shape of the horse’s back also helps with stretching hip adductors and improves pelvic tilt and trunk positioning. Often, the thera- pist has the child riding facing forward and backward as a way of stimulating different aspects of the sensory system. Hippotherapy also provides an envi- ronment that is much more stimulating and psychologically uplifting than the sterile therapy treatment room. Published research studies have docu- mented positive effects from horseback riding therapy. There was a decrease in spasticity immediately after the riding session.29 There were also improve- ments in sleeping and bowel routines noted in the same study. Improvements in children’s psychologic outlook have been reported as well.49 A suggestion of improved ambulation skills with a more energy-efficient gait has also been reported.50 There is enough evidence to conclude that hippotherapy is probably equal to other therapy approaches. However, the specific benefits of hippotherapy over standard therapy are not convincingly documented. Hippotherapy is a reasonable alternative to, or may be incorporated into, a standard therapy approach. A major obstacle for hippotherapy programs continues to be poor recognition of its benefit by secondary medical payors, requiring many of these programs to depend on donations or direct patient billing. Horseback riding as an athletic endeavor is enjoyed by many children as well. We have one patient with hemiplegia who has been able to develop a national ranking in English-style riding competition. This is a very practi- cal sport for children with CP who have enough motor skills that regular riding instructors can teach them horseback riding as a sport rather than as a therapy. Hydrotherapy: Swimming Therapy performed in water is called hydrotherapy. The effects of the water give children a feeling of weightlessness, which has been suggested as a way to reduce tone and allow these children to access better motor control.6 This modality is also used for postoperative rehabilitation to allow children to start walking with reduced weight bearing. Hydrotherapy is a reasonable modality for gait training, especially in a heavy child who may be able to walk in water with relative weightlessness from the floatation effects. Also, there is a technique for using the neurodevelopmental treatment approach to teach swimming to children with CP.51 There are no reports comparing hydrotherapy with standard therapy; however, one report suggested hydro- therapy and hippotherapy are equivalent but hippotherapy is cheaper.49 Based on this report, hippotherapy apparently is cheaper because it is less expen- sive to buy a horse than build a swimming pool. Hydrotherapy is a reasonable adjunctive modality to use in planning a therapy program for a child. Swimming as a recreational activity is excellent for individuals with CP. For many children who have a high-energy demand of walking in middle childhood, learning to swim and using this as the physical conditioning ex- ercise is an excellent option. A major problem for individuals whose main motor ability is by wheelchair is finding an exercise technique that can be performed comfortably but still provide cardiovascular stress. Swimming is a primary option for many of these individuals. If a childhood swimming program teaches children to be comfortable in water and learn to swim, there will potentially be lifelong benefits. There are some children with diplegia who can learn to become competitive swimmers and even compete with nor- mal age-matched peers.

4. Therapy, Education, and Other Treatment Modalities 131 Martial Arts The martial arts are an excellent choice for some children, even those who require assistive devices for walking. The routines in martial arts are usually individualized for the speed at which a child can learn; many of the routines also stress balance reaction, stretching, and large joint range of motion. Also, there is a clear system for making progressive steps with awarding levels of achievement, which is a great motivator for many children. The training for the martial arts occurs in community locations with regular community peers, which is another major advantage. The main problem with the mar- tial arts is the difficulty in finding instructors who are interested in teaching individuals with disabilities. Another problem of the martial arts for individ- uals who become very enthused about the sport is that at the higher levels of skill the motor impairments also make advancement very difficult. Sports Encouraging children with CP to get involved with typical age-matched sport activities is an excellent alternative to medically based therapy programs, especially for children with motor skills that allow them to enjoy the activ- ity. Physical therapists are in an excellent position to recommend to families specific sporting activities that would likely work for their children. For am- bulatory young children, the beginner soccer programs work well. For chil- dren with a need to work on balance and motor control, dance programs are an excellent option. Acupuncture Acupuncture with functional training has been reported to increase both children’s motor function and cognitive function.52 However, objective evi- dence is not strong to support the use of acupuncture. Apparently, the acupuncture meridians are closely related to the Vojta massage points, and there is a suggestion that both techniques may be stimulating the same sys- tem.18 There may be a close relationship in these two theories of practice because there is a separate discipline of acupressure, which is alleged to have similar effects as acupuncture.52 Because very few children enjoy injections, the routine use of acupuncture is much too stressful compared with any sug- gested or implied benefit to recommend its use in minor children. The use of pressure point manipulation by acupressure causes no harm if it is not uncomfortable to the children; however, there is no clear objective benefit of acupressure. Massage and Myofascial Release Therapy A major aspect of the Vojta technique of therapy is stimulation through a se- ries of massage points. There has been increased use of massage by some therapists, including borrowing techniques from chiropractors. Myofascial release therapy is one such technique that has been developed emanating from chiropractor practice. Although myofascial release therapy is not usu- ally described as massage, it is in fact a massage program with a minimal joint range of motion component. There are no English-language reports on the specific efficacy of massage compared with no therapy or other therapy modalities. Benefit has been reported for massage, reflexology, and other manipulations that are widely used in Eastern Europe and Russia.53, 54 Based

132 Cerebral Palsy Management on the available evidence, massage therapy seems to cause no harm if the therapy is comfortable and the children enjoy the therapeutic experience. If the therapy is in any way uncomfortable for these children, it cannot be jus- tified based on currently available data. Hyperbaric Oxygen Therapy There has been increased interest in the use of hyperbaric oxygen therapy for children with CP under the theory that more oxygen will make the brain function better. A small study suggested a possible benefit55; however, there have also been complications reported from this therapy.56 Based on this minimal evidence of a positive impact, a well-designed study was conducted in Montreal. This as yet unreported study has apparently shown that there is a small benefit to the child by sitting with the parent in the hyperbaric oxygen chamber for approximately 10 hours each week. However, the addition of hyperbaric oxygen to the chamber adds no additional benefit. Based on these results, there is no role for hyperbaric oxygen therapy in children with CP. Space Suit Therapy Therapy with children in space suits, initially designed to counteract the weightlessness of space by being pressurized and add elastic resistance to movement, was first investigated in Russia in the early 1990s. This device has several versions but the ADELI suit has had the most reported use.35, 57 This therapy has been popularized as a therapy treatment modality in Poland and is focused on improving sensory stimulation by providing children with the ability to stand through the resistance of the additional joint stiffness. Also, this method theoretically allows children to learn movement and stand- ing posture and balance strategies. All the outcome studies have reported changes in vestibular and postural control activities with gains reported on short-term evaluation.35, 57, 58 Because there are no objective functional gains reported, the measured effects are probably short term. In many patients we have examined after space suit therapy, we have not been able to determine any recognizable change. For American families with children who have CP, the opportunity to travel to Poland for 3 weeks seems to be a very positive experience. We suspect the opportunity to travel to Poland is more benefi- cial than the effect of the space suit. We would not recommend the use of the space suit in America because there is no evidence of functional improvement at this time. Alternative Medicine There are many alternative medicine techniques used to treat children with neurologic disabilities. Often, these practices arise out of local folk medicine. Many therapies used for the promotion of general health in health resort treatments are frequently promoted to those with disabilities. Such treat- ments as mud baths, reflexology, auriculotherapy, and various manipula- tions are promoted.53, 54 There are a few alternative therapies that seem to have persisted for a significant time period and have spread beyond a small local area into wider geographic representation. Craniosacral therapy and Feldenkrais therapy, discussed next, are two examples of such techniques. Craniosacral Therapy Craniosacral therapy was developed from the therapy practice of treatments promoted by Dr. William Sutherland, an osteopathic physician in the early

4. Therapy, Education, and Other Treatment Modalities 133 1900s. This theory and practice was picked up in the 1970s and 1980s by Dr. John Upledger, an osteopathic physician who has heavily promoted and further developed the current practice of craniosacral therapy. The under- lying therapy is based on the rhythmic pulsation and flow of the cerebro- spinal fluid, which is influenced by breathing. This rhythmic movement is supposed to cause movement of the cranial joints and, in the vibration effect, movement of every joint in the body. Therefore, the craniosacral therapist can perceive this movement anywhere in the body, but it is most noticeable in the cranium and facial bones. The therapy involves palpation of the area to be adjusted to perceive the rhythmic movement. Then, using very light pressure, this rhythmic movement is altered to a better state. This change al- lows the individual to be more relaxed and to generally function better. There are no medical reports evaluating the efficacy of craniosacral therapy.59, 60 Based on modern scientific understanding of anatomy, there is no theoreti- cal reason to recommend craniosacral therapy, although a few reports of par- ents and children report a sensation of being relaxed and alert after therapy sessions. This effect is probably similar to typical effects reported secondary to the sensory stimulation of many massage techniques. Feldenkrais Therapy In the early part of the 1900s, Moshi Feldenkrais grew up in Russia and Palestine, then was educated in Paris where he received a Ph.D. in physics. During this time, he developed a relationship with Jigaro Kano, who is the developer of modern judo. From Dr. Feldenkrais’ combined enthusiasm for Newtonian physics, especially with movements of mass, and the movements of judo, he devised a therapy technique that claims to increase intellect and general well-being and to improve motor function. The technique uses a ther- apist who gives verbal instructions on specific movements. These movements use positions and stretching specifically directed at increasing the individ- ual’s awareness, flexibility, and coordination. There are no medical reports evaluating this therapeutic approach. Based on reports of patients who have received Feldenkrais therapy, it does seem to involve many of the typical ther- apy positions often practiced as functional maneuvers, such as raising from the chair with a specific posture. These movements are combined with mar- tial arts positions, which are often held for periods of time. The functional motor movements seem to be realistic as therapeutic approaches for some individual children; however, the theories and claims of benefits are totally unsubstantiated and unrealistic. There may be elements of this technique that an experienced physical therapist could use in a treatment plan. Feldenkrais treatment by an individual who is not trained in standard phys- ical therapy is not recommended. There is a great risk of raising inappro- priate expectations in families and patients, especially when the Feldenkrais technique is performed and advocated by individuals with no medical background.

134 Cerebral Palsy Management References 1. Hur JJ. Review of research on therapeutic interventions for children with cere- bral palsy. Acta Neurol Scand 1995;91:423–32. 2. Weindling AM, Hallam P, Gregg J, Klenka H, Rosenbloom L, Hutton JL. A ran- domized controlled trial of early physiotherapy for high-risk infants. Acta Pae- diatr 1996;85:1107–11. 3. Bartlett DJ, Palisano RJ. A multivariate model of determinants of motor change for children with cerebral palsy. Phys Ther 2000;80:598–614. 4. Harris SR, Atwater SW, Crowe TK. Accepted and controversial neuromotor therapies for infants at high risk for cerebral palsy. J Perinatol 1988;8:3–13. 5. Hubel DH, Wiesel TN. The period of susceptibility to the physiological effects of unilateral eye closure in kittens. J Physiol (Lond) 1970;206:419–36. 6. Campbell S. Pediatric Neurologic Physical Therapy. New York: Churchill Liv- ingstone, 1991. 7. Bobath K. The Neurophysiological Basis for Treatment of Cerebral Palsy. Ox- ford: Spastics International Medical Publications, 1980. 8. Fetters L, Kluzik J. The effects of neurodevelopmental treatment versus practice on the reaching of children with spastic cerebral palsy. Phys Ther 1996;76:346–58. 9. Law M, Cadman D, Rosenbaum P, Walter S, Russell D, DeMatteo C. Neurode- velopmental therapy and upper-extremity inhibitive casting for children with cerebral palsy [see comments]. Dev Med Child Neurol 1991;33:379–87. 10. Law M, Russell D, Pollock N, Rosenbaum P, Walter S, King G. A comparison of intensive neurodevelopmental therapy plus casting and a regular occupational therapy program for children with cerebral palsy. Dev Med Child Neurol 1997; 39:664–70. 11. Hullin MG, Robb JE, Loudon IR. Gait patterns in children with hemiplegic spas- tic cerebral palsy [see comments]. J Pediatr Orthop B 1996;5:247–51. 12. Aebi U. Early treatment of cerebral movement disorders: findings among 50 school children. Helv Paediatr Acta 1976;31:319–33. 13. Rothberg AD, Goodman M, Jacklin LA, Cooper PA. Six-year follow-up of early physiotherapy intervention in very low birth weight infants. Pediatrics 1991;88: 547–52. 14. Jones RB. The Vojta method of treating cerebral palsy. Physiotherapy 1975;61: 112–3. 15. Imamura S, Sakuma K, Takahashi T. Follow-up study of children with cerebral coordination disturbance (CCD, Vojta). Brain Dev 1983;5:311–4. 16. Schutt B. Juvenile hip dislocation and the Vojta neuro-physiotherapy. Fortschr Med 1981;99:1410–2. 17. d’Avignon M, Noren L, Arman T. Early physiotherapy ad modum Vojta or Bo- bath in infants with suspected neuromotor disturbance. Neuropediatrics 1981; 12:232–41. 18. Stockert K. Acupuncture and Vojta therapy in infantile cerebral palsy—a com- parison of the effects. Wien Med Wochenschr 1998;148:434–8. 19. Joint executive board statement. American Academy of Pediatrics and American Academy of Neurology. Doman–Delacato treatment of neurologically handi- capped children. Neurology 1967;17:637. 20. Official statement. The Doman–Delacato treatment of neurologically handi- capped children. Arch Phys Med Rehabil 1968;49:183–6. 21. American Academy of Pediatrics Policy statement: the Doman–Delacato treat- ment of neurologically handicapped children. Pediatrics 1982;70:810–2. 22. Bairstow P, Cochrane R, Rusk I. Selection of children with cerebral palsy for conductive education and the characteristics of children judged suitable and un- suitable [see comments]. Dev Med Child Neurol 1991;33:984–92. 23. Reddihough DS, King J, Coleman G, Catanese T. Efficacy of programmes based on Conductive Education for young children with cerebral palsy. Dev Med Child Neurol 1998;40:763–70. 24. Catanese AA, Coleman GJ, King JA, Reddihough DS. Evaluation of an early childhood programme based on principles of conductive education: the Yooralla project. J Paediatr Child Health 1995;31:418–22.

4. Therapy, Education, and Other Treatment Modalities 135 25. Coleman GJ, King JA, Reddihough DS. A pilot evaluation of conductive education- based intervention for children with cerebral palsy: the Tongala project. J Pae- diatr Child Health 1995;31:412–7. 26. Alexander MA, Molnar, GE. Pediatric Rehabilitation: Physical Medicine and Rehabilation. Philadelphia: Hanley & Belfus, 2000. 27. Chae J, Hart R. Comparison of discomfort associated with surface and percuta- neous intramuscular electrical stimulation for persons with chronic hemiplegia. Am J Phys Med Rehabil 1998;77:516–22. 28. Carmick J. Managing equinus in children with cerebral palsy: electrical stimula- tion to strengthen the triceps surae muscle. Dev Med Child Neurol 1995;37: 965–75. 29. Exner G, Engelmann A, Lange K, Wenck B. Basic principles and effects of hippo- therapy within the comprehensive treatment of paraplegic patients. Rehabilitation (Stuttg) 1994;33:39–43. 30. Scheker LR, Chesher SP, Ramirez S. Neuromuscular electrical stimulation and dynamic bracing as a treatment for upper-extremity spasticity in children with cerebral palsy. J Hand Surg [Br] 1999;24:226–32. 31. Wright PA, Granat MH. Therapeutic effects of functional electrical stimulation of the upper limb of eight children with cerebral palsy. Dev Med Child Neurol 2000;42:724–7. 32. Hazlewood ME, Brown JK, Rowe PJ, Salter PM. The use of therapeutic elec- trical stimulation in the treatment of hemiplegic cerebral palsy. Dev Med Child Neurol 1994;36:661–73. 33. Pape KE, Kirsch SE, Galil A, Boulton JE, White MA, Chipman M. Neuro- muscular approach to the motor deficits of cerebral palsy: a pilot study. J Pedi- atr Orthop 1993;13:628–33. 34. Steinbok P, Reiner A, Kestle JR. Therapeutic electrical stimulation following selective posterior rhizotomy in children with spastic diplegic cerebral palsy: a randomized clinical trial. Dev Med Child Neurol 1997;39:515–20. 35. Sologubov EG, Iavorskii AB, Kobrin VI, Barer AS, Bosykh VG. Role of vestibu- lar and visual analyzers in changes of postural activity of patients with childhood cerebral palsy in the process of treatment with space technology. Aviakosm Ekolog Med 1995;29:30–4. 36. Damiano DL, Kelly LE, Vaughn CL. Effects of quadriceps femoris muscle strengthening on crouch gait in children with spastic diplegia. Phys Ther 1995; 75:658–67; discussion 668–71. 37. Damiano DL, Abel MF, Pannunzio M, Romano JP. Interrelationships of strength and gait before and after hamstrings lengthening. J Pediatr Orthop 1999;19: 352–8. 38. Kyllerman M. Reduced optimality in pre- and perinatal conditions in dyskinetic cerebral palsy—distribution and comparison to controls. Neuropediatrics 1983; 14:29–36. 39. Palmer FB, Shapiro BK, Allen MC, et al. Infant stimulation curriculum for in- fants with cerebral palsy: effects on infant temperament, parent-infant inter- action, and home environment. Pediatrics 1990;85:411–5. 40. Connolly KHF. Neurophysiology and Neuropsychology of Motor Development. London: Mac Keith Press, 1997. 41. Horn EM, Warren SF, Jones HA. An experimental analysis of a neurobehavioral motor intervention. Dev Med Child Neurol 1995;37:697–714. 42. Ottenbacher KJ, Biocca Z, DeCremer G, Gevelinger M, Jedlovec KB, Johnson MB. Quantitative analysis of the effectiveness of pediatric therapy. Emphasis on the neurodevelopmental treatment approach. Phys Ther 1986;66:1095–101. 43. Hulme JB, Bain B, Hardin M, McKinnon A, Waldron D. The influence of adap- tive seating devices on vocalization. J Commun Disord 1989;22:137–45. 44. Hulme JB, Shaver J, Acher S, Mullette L, Eggert C. Effects of adaptive seating devices on the eating and drinking of children with multiple handicaps. Am J Oc- cup Ther 1987;41:81–9. 45. Gisel EG, Schwartz S, Haberfellner H. The Innsbruck Sensorimotor Activator and Regulator (ISMAR): construction of an intraoral appliance to facilitate inges- tive functions. ASDC J Dent Child 1999;66:180–7, 154.

136 Cerebral Palsy Management 46. Gisel EG, Schwartz S, Petryk A, Clarke D, Haberfellner H. “Whole Body” mo- bility after one year of intraoral appliance therapy in children with cerebral palsy and moderate eating impairment. Dysphagia 2000;15:226–35. 47. Effgen S. The school. In: Dormans J, Pellegrino L, eds. Caring for Children with Cerebral Palsy. Baltimore: Brooks, 1998. 48. Riesser H. Therapy with the help of a horse—attempt at a situational analysis (author’s translation). Rehabilitation (Stuttg) 1975;14:145–9. 49. Barolin GS, Samborski R. The horse as an aid in therapy. Wien Med Wochenschr 1991;141:476–81. 50. McGibbon NH, Andrade CK, Widener G, Cintas HL. Effect of an equine- movement therapy program on gait, energy expenditure, and motor function in children with spastic cerebral palsy: a pilot study. Dev Med Child Neurol 1998; 40:754–62. 51. Harris SR. Neurodevelopmental treatment approach for teaching swimming to cerebral palsied children. Phys Ther 1978;58:979–83. 52. Zhou XJ, Chen T, Chen JT. 75 infantile palsy children treated with acupuncture, acupressure and functional training. Chung Kuo Chung Hsi I Chieh Ho Tsa Chih 1993;13:220–2, 197. 53. Babina LM. Health resort treatment of preschool children with cerebral palsy. Zh Nevropatol Psikhiatr Im S S Korsakova 1979;79:1359–63. 54. Mukhamedzhanov NZ, Kurbanova DU, Tashkhodzhaeva Sh I. The principles of the combined rehabilitation of patients with perinatal encephalopathy and its sequelae. Vopr Kurortol Fizioter Lech Fiz Kult 1992:24–8. 55. Montgomery D, Goldberg J, Amar M, et al. Effects of hyperbaric oxygen ther- apy on children with spastic diplegic cerebral palsy: a pilot project. Undersea Hyper Med 1999;26:235–42. 56. Nuthall G, Seear M, Lepawsky M, Wensley D, Skippen P, Hukin J. Hyperbaric oxygen therapy for cerebral palsy: two complications of treatment. Pediatrics 2000;106:E80. 57. Sologubov EG, Iavorskii AB, Kobrin VI. The significance of visual analyzer in controlling the standing posture in individuals with the spastic form of child cere- bral paralysis while wearing “Adel” suit. Aviakosm Ekolog Med 1996;30:8–13. 58. Semenova KA. Basis for a method of dynamic proprioceptive correction in the restorative treatment of patients with residual-stage infantile cerebral palsy. Neurosci Behav Physiol 1997;27:639–43. 59. Green C, Martin CW, Bassett K, Kazanjian A. A systematic review of cranio- sacral therapy: biological plausibility, assessment reliability and clinical effective- ness. Complement Ther Med 1999;7:201–7. 60. Rogers JS, Witt PL, Gross MT, Hacke JD, Genova PA. Simultaneous palpation of the craniosacral rate at the head and feet: intrarater and interrater reliability and rate comparisons. Phys Ther 1998;78:1175–85.

5 Durable Medical Equipment Durable medical equipment is the category of devices that are prescribed to ameliorate the disabilities from the motor impairments. Each of these de- vices, such as orthotics to assist with limb positioning or a seating system to assist with sitting, has very specific indications and contraindications. For physicians who care for children’s motor impairments, many more prescrip- tions are written for durable medical equipment than for drugs. Because each durable medical equipment device has its own indications, contraindica- tions, and risks, after a physician examination, a careful consideration of the risk–benefit ratio should be performed before a prescription is written. Many of these durable medical devices are very expensive, often ranging from $1,000 for an orthotic to more than $20,000 for a very sophisticated power wheelchair. It is the responsibility of the physician writing the prescription to understand the specific benefit the device is expected to provide and to know its contraindications and possible risks. It is the responsibility of both physicians and the durable medical equipment suppliers to inform patients and caretakers of the side effects and risks of the device. This process is ex- actly the same as used when physicians prescribe a drug, in which they are expected to understand the indications and contraindications of using spe- cific drugs in specific patients whom they have examined. Just as physicians should not write prescriptions for drugs they are not familiar with, there is no place for them to write prescriptions for durable medical equipment that they do not understand. Therefore, when a new device becomes available, physicians have to spend time and effort to learn about the device before it can be prescribed. The regulation and oversight of durable medical devices by government agencies is slowly getting better; however, there is still con- siderable room for entrepreneurs to develop and market a device with little scientific background. This development is especially common in the area of orthotic design, where there is minimal objective documentation available even for well-established designs. This area requires care, consideration, and evaluation of individual patient response to gain experience with specific new device designs. Often, the advertising rhetoric has little basis in the phys- ical facts of how patients respond. More commonly, the new device or de- sign has a narrow application in which it does make an improvement; how- ever, there is a tendency to generalize this improvement to all patients with cerebral palsy (CP), which does not work. The major categories of durable medical supplies that the physician who treats motor impairments must know about and be able to prescribe are orthotics, seating and mobility systems, and ambulatory aids.

138 Cerebral Palsy Management Orthotics The use of orthotic devices for children with CP has a long history, reaching its zenith just after the poliomyelitis epidemics of the 1950s. At this time, children were usually prescribed heavy, full hip-knee-ankle orthotics to con- trol crouch and provide support. This practice came from the polio expe- rience, which is a condition characterized by profound muscle weakness or paralysis. The very important difference between poliomyelitis and CP was not initially recognized. Although children with CP have weakness, the typ- ical predominating problem is spasticity with decreased motor control and poor balance. These heavy braces do nothing to help children with CP move. Also, in this earlier era the use of heavy, stiff orthopedic leather shoes that were felt to provide good support to the foot was widespread; however, all these shoes did was cover up the equinus deformity so it was not visible. In- variably, the ankle was still in equinus when a radiograph was obtained with the foot in the shoe. With the advent of modern thermoplastics, lightweight, form-fitting plastic orthotics have become the norm. Terminology The terminology for prescribing orthotics can be confusing. The most gen- eral rule for spine and lower extremity orthotics is that the orthosis is named for the joints that are crossed by the orthotic. For example, an orthosis that covers the ankle and the foot is called an ankle-foot orthosis (AFO). Often, modifiers are added to make the name more specific. For example, the term molded may be added to AFO, which then becomes a molded ankle-foot or- thosis (MAFO). The term MAFO is used to describe a plastic brace made from a mold produced from a cast of a child’s extremity where the orthotic is to be fitted. Sometimes functional modifiers are added, such as ground reaction AFO (GRAFO), to describe an orthotic used to prevent knee flexion in the stance phase of gait. Upper extremity orthotics more commonly carry func- tional terms, such as a resting hand splint or a wrist orthotic. Many of these orthotic names are very regionally specific or in fashion because of specific marketing campaigns by orthotic manufacturers, and thus change over time. Upper Extremity Orthotics Upper extremity orthotics are used almost exclusively to prevent deformity or reduce contractures. The most common use of upper extremity orthotics is in children with quadriplegic pattern involvement who develop significant wrist and elbow flexion contractures. Using orthotics to stretch against these deformities may slow the development of more severe contractures; however, objective evidence to support this concept is not well documented. There is little or no harm from the use of these orthotics so long as the children are not uncomfortable and there is no skin breakdown caused by the orthotics. From a rationale perspective, the use of these orthoses during the adolescent growth period makes some sense. The orthotics may stretch the muscles and provide some stimulus for them to grow if the stretch can be maintained for many hours each day. The exact amount of time an orthotic should be worn to be beneficial is unknown, but 4 to 8 hours of brace wear a day are prob- ably required. Very few children get functional benefits from the use of upper extrem- ity orthotics. Sometimes a very small thumb abduction orthosis will allow a child to hold a toy with finger grasp, which she could not do with the thumb in the palm. The benefit of upper extremity orthotic wear is not documented

5. Durable Medical Equipment 139 objectively; therefore, a child’s functional use of the limb should always be the determining factor. For example, if a child has a thumb-in-palm defor- mity that can be corrected with a thumb abduction orthotic but she refuses to bear weight or use the hand when the orthosis is applied, the orthotic should be abandoned. Shoulder Orthoses There are no useful orthotics for the shoulder. Attempts at abduction brac- ing of the shoulder are uniformly unsuccessful. An occasional child will have an abduction external rotation contracture of the shoulder with athetoid movement or spasticity that can be controlled using a wrist band and secur- ing the forearm to the waist belt or lap tray of the wheelchair. Some children also develop shoulder protraction, and occasionally a parent or therapist will want to try a figure-of-eight shoulder retraction orthosis; however, the strength of this protraction cannot be overcome with a figure-of-eight shoul- der orthosis because of its extremely poor mechanical advantage. Elbow Orthoses The principal deformity at the elbow that is amenable to bracing is flexion. In children with strong spastic flexion deformity, the use of a bivalve custom- molded high-temperature plastic orthotic is required. The use of fixed dial locks allows these orthotics to be placed in different degrees of flexion depending on the tolerance of the individual and their skin. Sometimes individuals can tolerate more extension on one day and less on the next. If the spasticity is weaker or the children are less than 10 years old, a low-temperature plastic orthotic that is molded to the flexor surface of the elbow with straps around the olecranon is simpler and much cheaper to construct. Usually, these or- thotics are fabricated by an occupational therapist, and they can also be easily modified with a low-temperature heat gun if more or less flexion is re- quired. There has been a recent commercial promotion to use elastic hinges at the elbow, which have continuous passive stretch on the elbow. No ob- jective data exist to support this concept, and the standard teaching is that spastic and elastic do not mix. This saying comes from the usual finding that a constant elastic stretch on a spastic muscle usually continues to initiate the spasticity. A fixed stretch will allow the muscle to slowly relax and stop con- tracting. However, this dogma is not well substantiated by objective testing. Pronation contractures are very common in the forearm of children with spasticity. There are no orthotics that can effectively control a spastic fore- arm pronation deformity, although trying circumferential wraps are usually not uncomfortable for the child with a mild deformity (Figure 5.1). Hand and Wrist Orthoses Wrist and finger flexion combined with thumb abduction and flexion are very common deformities in children with CP. Wrist extension orthoses are used mainly after surgical reconstruction to protect the tendon transfers for some additional months after cast immobilization has been discontinued. Usually, these orthotics are volar splints, which maintain the wrist in 20° to 30° of wrist extension and are worn full time (Figure 5.2). These wrist splints seldom provide a functional benefit to children and are usually poorly tol- erated for long-term use. In children or adolescents with hemiplegia, there is a major cosmetic concern about the appearance of the limb. The orthotic provides no functional gain and is very apparent; therefore, it is usually cos- metically rejected. Most children with good cognitive function object to wearing a wrist orthosis for more than a short postoperative period. A dor- sal wrist extension splint is sometimes better tolerated; however, there is no

140 Cerebral Palsy Management Figure 5.1. Using a soft foam material with A Velcro closures, a circumferential wrap can be designed to provide some supination (A) stretch along with wrist dorsiflexion and thumb abduction (B). Many children with strong pronation spasticity do not tolerate these wraps. B apparent improvement in function over the volar splint. The benefit of the dorsal splint is that it covers less of the palm and volar surface of the wrist and should therefore make more sensory feedback available to children dur- ing functional use. The disadvantage of the dorsal splint is that the force in the palm to extend the wrist is applied over a much smaller surface area, and if high force is required because of strong spasticity, the skin will often be- come irritated or develop breakdown. Resting Splints Resting hand splints, in which the wrist and fingers are all maximally ex- tended to the comfort level of individual children, are good splints to help stretch the forearm muscles during the adolescent growth period. This splint may be made with a dorsal or volar forearm component (see Figure 5.2). The dorsal forearm component is easier to stabilize on the arm; however, it is often harder for caretakers to apply. The opposite is true if a volar forearm component is used. The resting hand splint can incorporate thumb abduc- Figure 5.2. A splint that is entirely volar based can provide finger support or have the fingers free. This splint is very easy for caretakers to apply.

5. Durable Medical Equipment 141 A Figure 5.3. A dorsal-based resting hand splint B will provide wrist dorsiflexion, finger exten- sion, thumb abduction, and correction wrist ulnar deviation (A, B). The splint tends to be easy for caretakers to apply and is comfort- able if no excessive stretch is applied at the time of construction. For postoperative sup- port, the dorsal-based wrist extension splint is used during the day so that the child can start using active finger flexion. tion and extension as well as finger abduction (Figure 5.3). Often, children tolerate these splints poorly immediately after initial splint construction. However, if the wear time is gradually increased, a goal of 4 to 8 hours per 24-hour period can often be achieved. This goal is ideal if children can tol- erate the orthotic for this length of time; however, it is still worthwhile even if they can only tolerate the orthotic for 2 to 4 hours per day. Thumb Splint Thumb abduction and flexion is another common deformity. In most cases, this thumb deformity is combined with finger flexion and wrist flexion con- tractures, especially in children with quadriplegic pattern CP; therefore, the thumb deformity can be splinted using the global resting hand splint. For younger children with hemiplegia, thumb abduction can make finger grasp difficult. Using small, soft thumb abduction splints or low-temperature- molded abduction splints (Figure 5.4), the thumb can be positioned out of the palm in such a way that children can develop finger grasp. These splints should be limited to the absolute minimal amount of skin coverage possible because all skin coverage will reduce sensory feedback and the children will tend not to use their extremity. Swan Neck Splints Extensor tendon imbalance in the fingers may cause the fingers to become locked, with hyperextension of the proximal interphalangeal joint (PIP). This imbalance is most common in the long and ring fingers but occasionally oc- curs in the index finger. A metal or plastic figure-of-eight splint to prevent this hyperextension can be made (Figure 5.5). Usually, a plastic splint is used

142 Cerebral Palsy Management BC A Figure 5.4. Thumb abduction splints can first and, if individuals find the splinting function beneficial, a metal splint be constructed from a number of materials. is made, which is very cosmetically appealing because it looks like a cosmetic Using low-temperature plastic, a well-molded finger ring. In some individuals, these rings become uncomfortable because splint can be formed (A). There are also many of the amount of force that the ring exerts over the very narrow area of skin. commercial splints available that are often It is this narrow skin pressure that may limit the use of ring orthoses. more comfortable for the child (B, C). These are also available in different colors. Figure 5.5. Finger proximal interphalangeal Spinal Orthoses joint (PIP) joint hyperextension can be a dif- ficult problem that is easy to control in Soft Thoracolumbar Sacral Orthosis (TLSO) some individuals with extension block splints. One type of commercially available splint is Most children with CP who develop scoliosis are nonambulatory children plastic-covered wire (A), and another com- with quadriplegic pattern involvement. The scoliosis is in no way impacted mon type is a molded figure-of-eight type by the use of orthotics.1 There is a role for the use of spinal orthotics to plastic orthotic (B). support sitting in children who are not independent sitters. The preferred orthotic is a soft thoracolumbar sacral orthosis (TLSO) with metal or plastic A stays that are embedded in a soft plastic material (Figure 5.6). This soft ma- terial is well tolerated by sensitive skin and does not apply high areas of pres- sure. This soft TLSO works like a corset to support sitting. The orthotic may be worn over thin clothing so it is easy to apply and remove by caretakers. The TLSO is worn only at times when caretakers feel that the children have direct functional benefits. These orthotics are never worn during sleeping hours. Breathing may be restricted if the orthotic is too tight; however, the gain from upright sitting is approximately the same as the restriction from the orthotic.2 For children with gastrostomy tube feedings, an abdominal B